u/Hinatasamaa

Starting in August of 2024 I started having neurological symptoms that just made no sense. No neurologists could figure out what was wrong leading to misdiagnoses of psychological problems and attempts at pushing diagnoses like FND on me. Eventually I met a general neurologist who agreed to a lumbar puncture, and he found my opening pressure was 30. He explained anything over 20 was considered borderline high, and anything over 25 was considered severely high and for sure IIH. He also discussed how almost all my symptoms were typically symptoms of IIH and matched the puzzle pieces. He started me on 250mg of diamox once a day and 100mg of topimax twice a day right away. He then referred me to neuro-ophthalmology to get better IIH care and have my vision issues checked out since I was having vision issues. The medicine seemed to work a little bit but not much during the 4 months waiting for neuro-ophthalmology. I was getting frustrated and wondering if needed a higher dosage, but general neurology weirdly enough wouldn’t mess with the dosage until I see neuro-ophthalmology. I finally get in to see this guy and he agrees with the diagnosis. He talks about how he review all my MRIs and I had empty sella in all of them. He runs a lot of eye tests and discussed how I have “residual water markers” on my eyes “which means that at one point” I had “high papilledema” and that they “left small damage on my eyes”. He discusses how I even still have grade 1 papilledemas. He also diagnoses me with IIH. I’m like cool, and start mentioning that I feel I might need higher dosage of medicine because I keep having black out moments with my eyes… and his whole domineer changes. He starts discussing how 30 is considered only “borderline high” and that he has “patients who are at 60”. He then tells me that with “only grade 1 papilledemas” that my “case is considered only mild” to “his standards” and that “I shouldn’t need medicine because my symptoms shouldn’t be severe”. I feel caught off guard and start telling him with the general neurologist said. The neuro-ophtamologist kinda rolls his eyes and insists he “is much more knowledgeable in IIH then the general neurologist” and tells me I need to see a headache specialist because he feels like my IIH caused headaches are actually “complex migraines” and that all these IIH symptoms are are “something else entirely”. He takes me off my diamox entirely, and then cuts my topimax in half and says he will only put me back on medicine if my “papilledemas show me I need it” and sends me on my way very confused with a 3 month follow up. At this point I say screw it and do my own research where it’s suggesting every thing that he is saying is a load of belong and there is even people with IIH who don’t get papilledemas at all and this guy is about to ruin my life probably. He does order a MRV which comes back positive for “mild bilateral narrowing of the junction of the sigmoid and transverse”. Now I learned all narrowing of the veins for people with IIH should be referred to a neurointerventionalist to have pressure gradiented as just because it’s described as mild narrowing doesn’t mean the pressure isn’t build up and it’s actually not mild. So I message him asking if he will be referring me to a neurointerventionalist to have the narrowed vein looked at. He said it was not necessary as “Eveyone with IIH has bilateral narrowing veins” and that “it’s a normal common finding and doesn’t require treatment”. I am like ??? Wth ????

After this happens my general neurologist suddenly drops me and says I don’t need to be under his care anymore because “he isn’t specialized in IIH like a neuro-ophthalmologist is”. I feel completely confused about this too. Keep in mind they both work within the same university hospital so idk if they like said something to each other or what happened. So I’m left with no neuro care what so over for 3 months. As these 3 months go on my symptoms return and worsen. I’m talking the worst neck and shoulder pain of my life. The worst headaches. I pay out of pocket for a headache specialist as the referred headache specialist said it will be over a year to get in. She’s been doing this for over 25+ years and clocks immediately that I’m having IIH caused headaches. She continues prescribing my current dosage of topirimate and adds 25mg of topirimate to help with the headaches but I don’t notice much of a difference. Eventually I find myself in the hospital after a god awful pressure like headache happens and causes the same pain in my neck and shoulders. Then the next day comes around and the left side of my face goes numb, the eye feels like it’s gonna pop out my head (but both eyes hurt awfully bad), I can hear th heart beat in my left ear and my ear is muffled, it’s painful down the front of my neck now too on the left side only, and now I’m getting sharp pain down the side.

I’ve been through to a few ER centers and they keep just ruling out stroke and TIA and going idk. Did get admitted at one er place who ignored me when I told them about my IIH diagnosis, I think because they pulled the record from the neuro-ophthalmologist at the university hospital and it’s literally like “yeah I think she has a mild case of it but not severe enough to cause severe symptoms”. They eventually ran out of time with the insurance company and tried to say it was a hemiplagic migraine and should “clear up in a few days” and it did not clear up in a few days…. It’s been 4 weeks and no improvement. In fact the pain is worsening. The hospitals fid acknowledge papillledemas though and did seem confused why I was not on medicine so they gave me diamox and topimax because they’re saying I should be on medicine. I have a potential second opinion with a neuro-ophthalmologist recommended in a IIH group but I’m on his waiting list right now unfortunately. I also have an appointment with a neurointerventionalist on August 11th which I got by asking for a second opinion and basically begging them for help. I’m not sure if this was the move but the ERs are no longer doing anything but giving me migraine cocktails (which are ineffective) and phoning in like 5 narcotics and telling me to see “my pcp” which works for the same university and won’t refer me outside the university. I’m in the process of looking for another pcp but it takes fine.

What do you guys think? IIH related?

Age: 29

Height: 5 foot

Weight: 230, but technically 240 but I have water retention in both legs and face that they believe caused the 10 pound difference

Medications prior to the stroke like symptoms: Amitritryline 25mg a night, moderino 10mg 3x a day, ritzatriptan 10mg rescue medicine, levothyroxine 75mcg a day, levothyronine 5mcg twice a day, trazodone 150mg a night, prednisone 80mg a day (about two weeks in of a month trial run for a inflammatory issue for thyroid), Incassia birth control

Confirmed diagnoses: Hashimoto's thyroiditis, Idiopathic intracranial hypertension, Endometriosis (in remission after laprascopy and emblation in 2020), degenerative disk disease (but minor), Some kind of non-epileptic seizures (resolved once put on pressure lowering medicine, so doctors have been in disagreement if this is true functional seizures or convulse syncope), orthostatic hypotension (which was not resolving with the meds originally or with strategies and cardiologist was concerned I was having nervous system issues), overactive bladder syndrome

Some back story: I started having neurological symptoms about two years ago. Went to many neurologists who all had different opinions on what was wrong but often didn't run tests due to my age. Most tried to blame my mental health because I had mental health issues when I was teenager and was still seeing a counselor. I got extra help for about a year, but nothing resolved. Finally met a neurologist who ran many tests and found I had an opening pressure of 30 during a lumbar puncture. Many of my symptoms matched an IIH diagnosis. He started me on diamox 250 mg twice a day right away and topirimate 100 mg twice a day right away. Symptoms started to resolve including my seizure like symptoms, but some symptoms still remained. Mostly dizziness with vision issues. He referred me to a neuro-ophtamologist and discharged me from care saying that since he didn't specialize in IIH I no longer needed him. The neuro-ophtamologist sees me April 15 and confirmed IIH. He looked at past MRI scans and stated the radiologist missed empty sellas, he confirmed "residual damage" to my eyes caused by higher grade papilledemas, he acknowledged I still had grade 1 papilledemas, he states that based on a test I completed that my peripheral vision seems off, but that my "optic nerve thickness is not as bad as he expected". He does an MRV scan and finds that "There is mild narrowing at the junction of transverse and sigmoid sinuses, bilaterally". He says that since the "narrowing is mild" it is "nothing to worry about" even though based on the groups I am a part of I was talk any narrowing should be looked at by a **interventionalist**. By the end of spiel, he decides surprisingly that my case is "too mild" and that he feels I don't need any meds. He takes me off my diamox entirely and cuts my topirimate in half with plans to take me off of it entirely. He talks about how 30 pressure is "not that high" and how he has patients with "pressure of 60" in the spine. I tried to explain my concerns and reservations, but he said "if my papilledemas get bad again he will decide to put me on it again". He said my symptoms are not caused by IIH because "my IIH is too mild" based strictly off my papilledemas (even though there is such a thing as IIH without papilledemas) and that "I need to see a migraine specialist because I probably have complex migraines". I was devastated because I felt he had taken away my diagnosis.

I book with a migraine specialist online because the one he refers me to can't see me for over a year. This migraine specialist hears my symptoms and believes I am having IIH caused migraines as she has treated many patients with this as she has been a migraine specialist for a very long time. She says my migraines sound just like pressure migraines caused by IIH. She decides to keep me on the topirimate in an attempt to keep the pressure down, but keeps me on the low dose at the 50mg twice a day. Within a month, most my symptoms start to return again, and by 6/6/26 I have the worst pressure headache I have ever had. It feels like pressure all in my head and I feel pain behind my eyes. My head keeps having these tingly waves that last a few seconds and then goes away on top of my head. It feels like my head is burning and then traveling down my neck and into my shoulders. My ears start whooshing making them difficult to hear out of them and I feel nauseas. Then my vision starts to mess up. I know right away it is IIH caused headache. I try to take the ritzatriptan, but it doesn't help at all. I decide to just lay down with heating pad and try to let it pass like I always do. The headache doesn't pass but does diminish. On 6/7/26, the headache is still there but my friend and I made plans to go to the movie. We go and about halfway through the movie suddenly my face starts to grow tingling and numb before creeping down my entire left side. It feels tight and tingly. I sit there waiting for it to pass, but instead the burning pain in my neck starts to travel down my left side causing extreme pain. At this point I make the decision to go to the hospital. I am extremely tachycardic and they do an ekg that comes back abnormal, but for some reason ignore it? They see "complex migraine" my chart... which the neuro-opthamologist put in there for some reason, and decide its just a complex migraine. They give me a migraine cocktail, it is ineffective except for making me fall asleep due to the benadryl. They decide since I am sleepy I am better and send me home. I start to feel heavy pressure on my left side now and go back to the hospital. This time they do a CT scan which comes back clear. They do another migraine cocktail which is still ineffective. They send me home again. The pain increases so I go to a different hospital this time. This hospital is concerned because I am extremely tachycardic there too. My ekg comes back abnormal again. They again ignore it? They look at my chart. They go to give me a migraine cocktail. I try to explain I have already had two and they have both been ineffective. They do a CT angiogram and it comes back clean. They said since I have not had a stroke or TIA that it "isn't anything serious". They give me the migraine cocktail again. It is ineffective. I wake up next morning and now I can't walk or lift on my left side. I go to a different hospital. This one is concerned about my tachycardia and stroke like symptoms. They admit me mostly due to the tachycardia. For some reason, the neurology team is convinced all my symptoms are caused by anxiety. I have a cardiac event in front of the neurologist trying to assess me where heart rate increase to 180. Nurses rush in with ekg machine and discuss crash cart. Neurologist is convinced it is "just an anxiety attack". EKG machine says otherwise though. Neurologist gets frustrated that "I won't calm down" and leaves without getting full history or what is truly going on. They have to push meds to get heart rate down or else crash cart would have been brought in. Cardiologist is brought on the team who pulls every ekg from all hospitals and runs lots of heart tests on me. He determines I have an electrical signal heart issue called atrial tachycardia and that this isn't an anxiety issue. He has to explain this to the neurologists as apparently neurologists have spent two days of my 6 day hospital visit trying to find a psychological reason for my symptoms.

Neurologists do a brain MRI without contrast. They find 4 deep foci white matter lesions with two being bilaterally on the frontal cortex and two being on the right periventrical. They acknowledge it is rare for someone my age to have "deep foci lesions", but insist since it is only 4 they are non-specific and as a result "are probably just caused by migraines". They said MRI did show signs of "IIH issues" but would not elaborate what they mean, and it was not in the radiology report so I have no idea what they saw. They run lots of tests and see I have a minor B12 deficiency. They decide my entire left side hemiparesis is due to my B12 deficiency. So they diagnosis me with B12 deficiency with hemiplagic migraines and say that my "left-sided hemiparesis should clear up in a few days after taking the B12 supplements" and that "since it is just a hemiplagic migraine it will go away in a few days". I go home, and three days later I suddenly have a acute kidney injury in my left kidney after severe flank pain. I end up with the acute kidney injury turning into a kidney infection due to all the bad stuff going into it which then causes sepsis. I go back to the same hospital who admits me again. They insist it is not connected to my current issues on my left side, despite the weirdness that my left kidney has never had any problems until the left sided paralysis. They fix me up and send me home again. It has now been 4 weeks since then and symptoms have not resolved, in fact they have gotten worse. Headache specialist is unconvinced this is a hemiplagic migraine as I should have pulled out of it by now, and I am having symptoms now even when headache goes away. I use a cane now because I cannot walk right on my left side. Vision issues continue to worsen and is 24/7. Head constantly has pressure feeling in it. Pain is constant. I am waiting months for the specialists that they say I need to see, and the only medicine they gave me to help was pain medicine that they said to take "until I see specialists". Orthopedic doctor prescribed gabapentin which does help some which she says suggests this is all nerve pain which means more then likely it is neurological or a pinch nerve, but not many pinched nerves would impact the entire body the way it is. I have had MRIs of my cervical spine and thoracic spine with nothing major enough to cause this. I am getting lumbar spine next, but she is saying nothing in the lumbar spine will give me neurological symptoms.

Here are my symptoms:

Symptoms:

Vision is off. More blurry to the point I can’t see as clearly far away. Bright lights and shadows leave residual shadows and bright lights. I cannot see objects in peripheral vision and keep bumping into things and people. I also get double vision.

Headaches feel like pure pressure in my head. Hurts behind my eyes and hurts my ears (but really impacts the left ear). Feels like burning pain in head traveling down to neck and shoulder. Migraine cocktails and meds are often ineffective.

Neck and shoulder pain can get extruciafing. Muscle relaxers do not help this pain. Gabapentin does have some effect but dosage may need to be adjusted as it it has not taken pain away entirely.

Feel nauseas and light headed especially when standing up or sitting upright (sometimes even laying down I feel light headed). It feels like a rocking ship or as if my head is moving side to side.

Hemiparesis. Was sitting in a movie when suddenly my left side started to hurt really bad, felt burning like in my head but now crept down my left side. My left side also seemed to have diminished feeling and was tingly. It was down my face all the way down to my foot. Neck, head,and shoulder felt worse out of the rest of the body. Headache made my eyes feel sunk in like half of my eyes had fallen out. Hospital ruled out stroke and TIA with a CT scan and angiogram. Hospital did MRI imaging where they confirmed that I had empty sella again, and 4 deep foci white lesions but that “it wasn’t enough to mean anything substantial”. Eventually hemiplagic migraine diagnosis after being unable to find a cause for my hemiparesis. Told me I should be better “within a few days”. However, four weeks go by and the Hemiparesis never goes away. In fact it worsens. I see the headache specialist who doesn’t think I have hemiplagic migraines. She says the migraine should have resolved by now, and that what I’m describing doesn’t entirely fit criteria for hemiplagic migraine. She suggests I go back under the care of the neuro-ophthalmologist as she strongly believes my IIH is causing major problems and worsening but when I called the neuro-opthalmologist to tell him what is going on his office will not answer portal messages or return my calls. They said he was on "vacation" at first, but I would think he is back by now.

During the worsening of symptoms, I suddenly receive a tachycardia electric signaling issue. The neurologists originally try to insist it’s just anxiety until I end up in 180 vtech. Then they bring in a cardiologist. He runs many ekgs and looks at past ones and diagnoses me with atrial tachycardia. This basically means I have a sudden arrthymia causing heart rate to be unstable and spike randomly that isn’t improving but instead worsening. I can’t get my heart rate down below 110 even with the medicine.

Heavy pressure eventually does move down into left chest area and left stomach area. It does relieve slightly with gabapentin but only after taking all 3 doses for the whole day and getting ready for bed. By morning it’s back again.

Painful swallowing and painful knot thingy in throat when not swallowing since stroke like episode. When eating it hurts to swallow like something is there or I am forcing against something. When I am not eating the knot? Idk what to call it as I don’t feel anything there, but it feels like something stuck or maybe muscle freaking out idk, but when I’m not eating it still spasms out and does the painful swallowing thing many times on its own until my gag reflex activates causes some throw up in mouth.

Weird tingly waves passing over my head. It’s like ocean waves of tingly feeling. It doesn’t happen everyday but when symptoms are intense it happens. It lasts for a few seconds to a few minutes.

Orthostatic hypotension was an issue but now it’s orthostatic hypertension after this incident and blood pressure is now too high causing them to take me off the moderino. So my blood pressure is all over the place.

Brain fog has been awful. I can’t think straight. I also misspell words now. Have a hard time stringing sentences together. Memory issues have been bad I forget what I’m saying and forget the names of things.

Pain in front of neck? Like my carotid artery is sore. I feel blood flow might be impacted somehow but it’s just a guess. I am seeing a **neurointerventionalist** on August 11th, but I worry about how I am gonna make it another 6 weeks with the amount of pain I am in. Neurologists on the other hand is another issue. It is hard to find a new one. The one who did all the tests originally did agree to see me again, but he told me there wasn't anything else he could do for me in his last appointment with him. I am on a waiting list for a new neuro-opthamologist who says he specializes in IIH. The one I have now supposedly does not specialize in it according to my neurointervantionalist who specializes in it. He says only two in the area actually specializes in it.

My thought just based off my research is the IIH is causing the veins in my head to constrict which could be causing some if not all my symptoms as the blood flow is restricted due to the constricting. I also think the bilaterial narrowing of the junction of the transverse and sigmoid sinuses may have worsened and may no longer be mild. I am unsure if any of this could typically be caught on the scans already been done as I am not doctor. I just feel my entire life is ending at 29 and am confused how this happened with no signs of a stroke or TIA.

What do you think doctors of reddit? I have taken by B12 religiously and recent bloodwork shows no B12 deficiency anymore. Migraine doctor feels convinced these are pressurized migraines caused by IIH, and not hemiplagic migraines. The neuro-opthamologist wont return my messages and calls regarding any of this, but I see him July 14th. Kidney doctor is concerned about my kidney functioning and cannot find a reason for my acute kidney injury as no sign of damage to the kidney, no back up in the kidney, and no UTI which are the usual causes of kidney injury. Cardiologist has me on a heart monitor and is confused why my heart is suddenly impacted. Cardiologist is thoroughly convinced I am having nervous system issues, but when she passes that info along to neurology they keep saying it is "rare to have nervous system issues" and insist I don't have it. I feel like none of my doctors can agree with each other.

Sorry for the long post! Hope this is enough info for all of you!

Age: 29

Height: 5 foot

Weight: 230, but technically 240 but I have water retention in both legs and face that they believe caused the 10 pound difference

Medications prior to the stroke like symptoms: Amitritryline 25mg a night, moderino 10mg 3x a day, ritzatriptan 10mg rescue medicine, levothyroxine 75mcg a day, levothyronine 5mcg twice a day, trazodone 150mg a night, prednisone 80mg a day (about two weeks in of a month trial run for a inflammatory issue for thyroid), Incassia birth control

Confirmed diagnoses: Hashimoto's thyroiditis, Idiopathic intracranial hypertension, Endometriosis (in remission after laprascopy and emblation in 2020), degenerative disk disease (but minor), Some kind of non-epileptic seizures (resolved once put on pressure lowering medicine, so doctors have been in disagreement if this is true functional seizures or convulse syncope), orthostatic hypotension (which was not resolving with the meds originally or with strategies and cardiologist was concerned I was having nervous system issues), overactive bladder syndrome

Some back story: I started having neurological symptoms about two years ago. Went to many neurologists who all had different opinions on what was wrong but often didn't run tests due to my age. Most tried to blame my mental health because I had mental health issues when I was teenager and was still seeing a counselor. I got extra help for about a year, but nothing resolved. Finally met a neurologist who ran many tests and found I had an opening pressure of 30 during a lumbar puncture. Many of my symptoms matched an IIH diagnosis. He started me on diamox 250 mg twice a day right away and topirimate 100 mg twice a day right away. Symptoms started to resolve including my seizure like symptoms, but some symptoms still remained. Mostly dizziness with vision issues. He referred me to a neuro-ophtamologist and discharged me from care saying that since he didn't specialize in IIH I no longer needed him. The neuro-ophtamologist sees me April 15 and confirmed IIH. He looked at past MRI scans and stated the radiologist missed empty sellas, he confirmed "residual damage" to my eyes caused by higher grade papilledemas, he acknowledged I still had grade 1 papilledemas, he states that based on a test I completed that my peripheral vision seems off, but that my "optic nerve thickness is not as bad as he expected". He does an MRV scan and finds that "There is mild narrowing at the junction of transverse and sigmoid sinuses, bilaterally". He says that since the "narrowing is mild" it is "nothing to worry about" even though based on the groups I am a part of I was talk any narrowing should be looked at by a interventionalist. By the end of spiel, he decides surprisingly that my case is "too mild" and that he feels I don't need any meds. He takes me off my diamox entirely and cuts my topirimate in half with plans to take me off of it entirely. He talks about how 30 pressure is "not that high" and how he has patients with "pressure of 60" in the spine. I tried to explain my concerns and reservations, but he said "if my papilledemas get bad again he will decide to put me on it again". He said my symptoms are not caused by IIH because "my IIH is too mild" based strictly off my papilledemas (even though there is such a thing as IIH without papilledemas) and that "I need to see a migraine specialist because I probably have complex migraines". I was devastated because I felt he had taken away my diagnosis.

I book with a migraine specialist online because the one he refers me to can't see me for over a year. This migraine specialist hears my symptoms and believes I am having IIH caused migraines as she has treated many patients with this as she has been a migraine specialist for a very long time. She says my migraines sound just like pressure migraines caused by IIH. She decides to keep me on the topirimate in an attempt to keep the pressure down, but keeps me on the low dose at the 50mg twice a day. Within a month, most my symptoms start to return again, and by 6/6/26 I have the worst pressure headache I have ever had. It feels like pressure all in my head and I feel pain behind my eyes. My head keeps having these tingly waves that last a few seconds and then goes away on top of my head. It feels like my head is burning and then traveling down my neck and into my shoulders. My ears start whooshing making them difficult to hear out of them and I feel nauseas. Then my vision starts to mess up. I know right away it is IIH caused headache. I try to take the ritzatriptan, but it doesn't help at all. I decide to just lay down with heating pad and try to let it pass like I always do. The headache doesn't pass but does diminish. On 6/7/26, the headache is still there but my friend and I made plans to go to the movie. We go and about halfway through the movie suddenly my face starts to grow tingling and numb before creeping down my entire left side. It feels tight and tingly. I sit there waiting for it to pass, but instead the burning pain in my neck starts to travel down my left side causing extreme pain. At this point I make the decision to go to the hospital. I am extremely tachycardic and they do an ekg that comes back abnormal, but for some reason ignore it? They see "complex migraine" my chart... which the neuro-opthamologist put in there for some reason, and decide its just a complex migraine. They give me a migraine cocktail, it is ineffective except for making me fall asleep due to the benadryl. They decide since I am sleepy I am better and send me home. I start to feel heavy pressure on my left side now and go back to the hospital. This time they do a CT scan which comes back clear. They do another migraine cocktail which is still ineffective. They send me home again. The pain increases so I go to a different hospital this time. This hospital is concerned because I am extremely tachycardic there too. My ekg comes back abnormal again. They again ignore it? They look at my chart. They go to give me a migraine cocktail. I try to explain I have already had two and they have both been ineffective. They do a CT angiogram and it comes back clean. They said since I have not had a stroke or TIA that it "isn't anything serious". They give me the migraine cocktail again. It is ineffective. I wake up next morning and now I can't walk or lift on my left side. I go to a different hospital. This one is concerned about my tachycardia and stroke like symptoms. They admit me mostly due to the tachycardia. For some reason, the neurology team is convinced all my symptoms are caused by anxiety. I have a cardiac event in front of the neurologist trying to assess me where heart rate increase to 180. Nurses rush in with ekg machine and discuss crash cart. Neurologist is convinced it is "just an anxiety attack". EKG machine says otherwise though. Neurologist gets frustrated that "I won't calm down" and leaves without getting full history or what is truly going on. They have to push meds to get heart rate down or else crash cart would have been brought in. Cardiologist is brought on the team who pulls every ekg from all hospitals and runs lots of heart tests on me. He determines I have an electrical signal heart issue called atrial tachycardia and that this isn't an anxiety issue. He has to explain this to the neurologists as apparently neurologists have spent two days of my 6 day hospital visit trying to find a psychological reason for my symptoms.

Neurologists do a brain MRI without contrast. They find 4 deep foci white matter lesions with two being bilaterally on the frontal cortex and two being on the right periventrical. They acknowledge it is rare for someone my age to have "deep foci lesions", but insist since it is only 4 they are non-specific and as a result "are probably just caused by migraines". They said MRI did show signs of "IIH issues" but would not elaborate what they mean, and it was not in the radiology report so I have no idea what they saw. They run lots of tests and see I have a minor B12 deficiency. They decide my entire left side hemiparesis is due to my B12 deficiency. So they diagnosis me with B12 deficiency with hemiplagic migraines and say that my "left-sided hemiparesis should clear up in a few days after taking the B12 supplements" and that "since it is just a hemiplagic migraine it will go away in a few days". I go home, and three days later I suddenly have a acute kidney injury in my left kidney after severe flank pain. I end up with the acute kidney injury turning into a kidney infection due to all the bad stuff going into it which then causes sepsis. I go back to the same hospital who admits me again. They insist it is not connected to my current issues on my left side, despite the weirdness that my left kidney has never had any problems until the left sided paralysis. They fix me up and send me home again. It has now been 4 weeks since then and symptoms have not resolved, in fact they have gotten worse. Headache specialist is unconvinced this is a hemiplagic migraine as I should have pulled out of it by now, and I am having symptoms now even when headache goes away. I use a cane now because I cannot walk right on my left side. Vision issues continue to worsen and is 24/7. Head constantly has pressure feeling in it. Pain is constant. I am waiting months for the specialists that they say I need to see, and the only medicine they gave me to help was pain medicine that they said to take "until I see specialists". Orthopedic doctor prescribed gabapentin which does help some which she says suggests this is all nerve pain which means more then likely it is neurological or a pinch nerve, but not many pinched nerves would impact the entire body the way it is. I have had MRIs of my cervical spine and thoracic spine with nothing major enough to cause this. I am getting lumbar spine next, but she is saying nothing in the lumbar spine will give me neurological symptoms.

Here are my symptoms:

Symptoms:

Vision is off. More blurry to the point I can’t see as clearly far away. Bright lights and shadows leave residual shadows and bright lights. I cannot see objects in peripheral vision and keep bumping into things and people. I also get double vision.

Headaches feel like pure pressure in my head. Hurts behind my eyes and hurts my ears (but really impacts the left ear). Feels like burning pain in head traveling down to neck and shoulder. Migraine cocktails and meds are often ineffective.

Neck and shoulder pain can get extruciafing. Muscle relaxers do not help this pain. Gabapentin does have some effect but dosage may need to be adjusted as it it has not taken pain away entirely.

Feel nauseas and light headed especially when standing up or sitting upright (sometimes even laying down I feel light headed). It feels like a rocking ship or as if my head is moving side to side.

Hemiparesis. Was sitting in a movie when suddenly my left side started to hurt really bad, felt burning like in my head but now crept down my left side. My left side also seemed to have diminished feeling and was tingly. It was down my face all the way down to my foot. Neck, head,and shoulder felt worse out of the rest of the body. Headache made my eyes feel sunk in like half of my eyes had fallen out. Hospital ruled out stroke and TIA with a CT scan and angiogram. Hospital did MRI imaging where they confirmed that I had empty sella again, and 4 deep foci white lesions but that “it wasn’t enough to mean anything substantial”. Eventually hemiplagic migraine diagnosis after being unable to find a cause for my hemiparesis. Told me I should be better “within a few days”. However, four weeks go by and the Hemiparesis never goes away. In fact it worsens. I see the headache specialist who doesn’t think I have hemiplagic migraines. She says the migraine should have resolved by now, and that what I’m describing doesn’t entirely fit criteria for hemiplagic migraine. She suggests I go back under the care of the neuro-ophthalmologist as she strongly believes my IIH is causing major problems and worsening but when I called the neuro-opthalmologist to tell him what is going on his office will not answer portal messages or return my calls. They said he was on "vacation" at first, but I would think he is back by now.

During the worsening of symptoms, I suddenly receive a tachycardia electric signaling issue. The neurologists originally try to insist it’s just anxiety until I end up in 180 vtech. Then they bring in a cardiologist. He runs many ekgs and looks at past ones and diagnoses me with atrial tachycardia. This basically means I have a sudden arrthymia causing heart rate to be unstable and spike randomly that isn’t improving but instead worsening. I can’t get my heart rate down below 110 even with the medicine.

Heavy pressure eventually does move down into left chest area and left stomach area. It does relieve slightly with gabapentin but only after taking all 3 doses for the whole day and getting ready for bed. By morning it’s back again.

Painful swallowing and painful knot thingy in throat when not swallowing since stroke like episode. When eating it hurts to swallow like something is there or I am forcing against something. When I am not eating the knot? Idk what to call it as I don’t feel anything there, but it feels like something stuck or maybe muscle freaking out idk, but when I’m not eating it still spasms out and does the painful swallowing thing many times on its own until my gag reflex activates causes some throw up in mouth.

Weird tingly waves passing over my head. It’s like ocean waves of tingly feeling. It doesn’t happen everyday but when symptoms are intense it happens. It lasts for a few seconds to a few minutes.

Orthostatic hypotension was an issue but now it’s orthostatic hypertension after this incident and blood pressure is now too high causing them to take me off the moderino. So my blood pressure is all over the place.

Brain fog has been awful. I can’t think straight. I also misspell words now. Have a hard time stringing sentences together. Memory issues have been bad I forget what I’m saying and forget the names of things.

Pain in front of neck? Like my carotid artery is sore. I feel blood flow might be impacted somehow but it’s just a guess. I am seeing a neurointerventionalist on August 11th, but I worry about how I am gonna make it another 6 weeks with the amount of pain I am in. Neurologists on the other hand is another issue. It is hard to find a new one. The one who did all the tests originally did agree to see me again, but he told me there wasn't anything else he could do for me in his last appointment with him. I am on a waiting list for a new neuro-opthamologist who says he specializes in IIH. The one I have now supposedly does not specialize in it according to my neurointervantionalist who specializes in it. He says only two in the area actually specializes in it.

My thought just based off my research is the IIH is causing the veins in my head to constrict which could be causing some if not all my symptoms as the blood flow is restricted due to the constricting. I also think the bilaterial narrowing of the junction of the transverse and sigmoid sinuses may have worsened and may no longer be mild. I am unsure if any of this could typically be caught on the scans already been done as I am not doctor. I just feel my entire life is ending at 29 and am confused how this happened with no signs of a stroke or TIA.

What do you think doctors of reddit? I have taken by B12 religiously and recent bloodwork shows no B12 deficiency anymore. Migraine doctor feels convinced these are pressurized migraines caused by IIH, and not hemiplagic migraines. The neuro-opthamologist wont return my messages and calls regarding any of this, but I see him July 14th. Kidney doctor is concerned about my kidney functioning and cannot find a reason for my acute kidney injury as no sign of damage to the kidney, no back up in the kidney, and no UTI which are the usual causes of kidney injury. Cardiologist has me on a heart monitor and is confused why my heart is suddenly impacted. Cardiologist is thoroughly convinced I am having nervous system issues, but when she passes that info along to neurology they keep saying it is "rare to have nervous system issues" and insist I don't have it. I feel like none of my doctors can agree with each other.

Sorry for the long post! Hope this is enough info for all of you!

I was pretty sure I was misdiagnosed by a previous neurologist who immediately diagnosed me with functional seizures/PNES without any testing. This is mostly because when I developed the seizures nothing traumatic had really occurred, and my emotions were under control. The seizures came out of no where with no clear cause, and I had many other symptoms that came along with them and no clear cause. Since being put on seizure medicine by a different professional who I thought believed that none of this was in my head the seizures stopped for the most part. I went from 4 to 5 seizures a day to only 1 every 5 months or so (sometimes longer). Recently I had my epilepsy specialist terminate me as a patient with a weird discussion about how sometimes emotions impact us in ways we don’t realize and he wanted to stop my seizure medication. I expressed concern. He told me my IIH medication also acted as a seizure medication. When I googled it I realized it did. He told me his services wouldn’t be needed anymore which I found weird, but he said the IIH doctor would handle everything. The IIH doctor referred me to a neuropsychiatrist to handle my seizures. I expressed confusion by this and told him I didn’t need a psychiatrist. He told me this was just a normal psychiatrist mixed with a neurologist. Then when finally getting in with the guy turns out this guy was a clinical psychologist sent to break the news that they too felt my seizures was “functional seizures” or what used to be called PNES. He basically said all of this is in my head and the seizure medication isn’t actually working in the way I think it is but instead is acting “as a placebo effect” and that my brain “just thinks it’s working because it eases my anxiety”. I’m so confused, because my seizures don’t seem similar to PNES seizures. I don’t close my eyes when seizing, they aren’t abnormal in nature, and none of them have been over 5 minutes long. I just recently found out I have IIH and a stenosis in my brain. I also found out I might have a rare genetic condition. Every doctor I meet seems to not care about what I’ve been going through for two years and just either gives up or passes me off to the next specialist. I went from a fully functional adult to someone who cannot function and no one seems to want to help or treat me. At first everyone was blaming it all on mental health despite not having any mental health concerns prior to emergent of symptoms. I am legit a licensed mental health professional! I’m the first line in defense for those struggling with their mental health! I feel so lost, and now I’m back to being told these seizures are mental health related despite medication having worked all these months and stopping seizures. They’re taking me off the meds now because eeg monitoring came back clear and they’re saying I don’t need the meds. They said since I stayed several days in the eeg monitoring unit without the medicine and had numerous seizures that didn’t show up on eeg monitoring that it couldn’t possibly epilepsy. I feel pretty confused and just lost. I’m also terrified of the seizures returning without the medicine as that was the only thing stopping them :(

Hello everyone! I have a lot going on. I was diagnosed with IIH with an opening pressure of 30 after several neurological symptoms (I have every symptom in the lil guide you guys have and then some). I was put on topirimate 200mg a day and was referred to a neuro-ophthalmologist but symptoms continued to worsened. When i finally got in he acknowledged that I have scarring or damage from previous higher grade paps and acknowledged all my symptoms matched IIH except some of them match more of a nervous system disorder. He believes I might have a duel diagnosis. He tested my eyes and says I only have grade 1 paps and says my IIH must be low now because my eyes don’t reflect high IIH and decided he wanted to wheen me off the topirimate because he believes I’m having side effects. He ordered a MRV whee I was diagnosed with a bilateral mild transverse sinus stenosises on both sides. Neuro-opthamologist is saying that since it is mild there is no point to have surgical means to help fix it and he does not plan to deviate from current treatment plan. When I asked for a reminder on what current treatment plan is as he’s currently wheening me off of topirimate, he said he’s currently planning to take me off of topirimate and will just “watch to see if my paps get worse” with no plans to treat my IIH any longer. This is while having debilitating symptoms of IIH for the past two years that has ruined my life and still having symptoms. He basically told me I don’t need to be on the medicine because my case of IIH is mild since my opening pressure was only 30, and that my paps are only grade 1 paps so that means the “new opening pressure wouldn’t be that high”. He discussed how he has clients that have an opening pressure of “60” and basically compared me to them. It was only my first appointment with him, and my family is pushing to continue care with him but I’m feeling very dejected. He recognizes I’m in a lot of pain and I’m dealing with every symptom of IIH, but in the same motion insisting I’m “too mild of a case” and feels “medicine would be more harmful then helpful due to side effects”. I don’t know how I feel about this or what I should do. He did put me on amitriptyline 10mg for headaches but that has only helped a little bit. I still have them all day long and they do make it difficult to enjoy life sometimes. On top of that, I have other conditions such as neurogenic orthostatic hypotension and other nervous system like symptoms that they’re having a hard time finding a diagnosis for that he’s showing no interest in because “it’s not in his field”. I feel like I waited all this time to see this guy just to meet another dismissive specialist and I don’t know what to do. Everything I read online says going off the medicine will worsen symptoms and even worsen the stenosis.

Is this other people’s experience with IIH? Should I get a second opinion?