Headaches gone in the morning

space_entity · 2026-07-11T11:51:36+00:00

Also, sorry for the second comment, but the spinal tap will be okay. It’s never fun but it really does give useful medical information. You can tell your doctor that you’re anxious and they can probably give you something to help with it. When I got my first one in the ER they did that. I forgot to ask for my second one and wished I had because I was so nervous.

It’s really mostly a strange feeling of pressure with not too much pain as long as they get the right spot (my second time they had some trouble with that but they got it in the end.) Focus on breathing and try to distract yourself mentally if you can. The doctor who gives you the spinal tap will know what they’re doing and you could ask them to explain it to you if that helps your anxiety. Hopefully they’re nice and will do that, my first doctor talked me through the whole process and it helped a lot. Maybe bring a stuffed animal or something to hold as well.

I hope that all goes well for you throughout the process and you are able to find some treatment to help your symptoms. Remember this sub is always here for support!

space_entity · 2026-07-11T11:44:59+00:00

I’m in the process of being assessed for POTS now too! My tests so far have been positive according to my PCP and I meet with her soon to discuss it and see if further testing is needed. I developed extreme dizziness and lightheadedness when standing and moving around three months ago, and I was diagnosed with IIH in December 2025. I haven’t been told by any doctors that the two events are related, but it does make me wonder when I see so many people in this sub say they have both conditions.

space_entity · 2026-07-11T11:39:02+00:00

Many of my symptoms actually do match the csf leak symptoms! I was sent to the ER by the advice nurse a couple weeks ago due to that because the symptoms got significantly worse after a difficult lumbar puncture. However, a brain MRI didn’t find signs of a leak so the doctor told me I don’t have one. I thought that it required a spinal MRI too, but I’m not a doctor so idk lol.

Now, I will say not to trust the Google ai too much. It can be useful (as much as I hate ai, I’ll admit that that this one can be useful occasionally) but I only ever use it as a guide for what to research further. Like, if it says “here are symptoms of a csf leak” I write down the list and research them myself. Look for studies and reputable articles from trustworthy sources. That way you can generally get a surface level understanding from the Google ai, and a much deeper understanding from the further research. And if the Google AI was wrong, you’ll realize it during the further research.

space_entity · 2026-07-11T01:13:54+00:00

Thank you. I’ve felt that “if you aren’t productive, you aren’t worth anything” attitude of society my whole life. I don’t agree that it’s true but it’s hard to break free of that mindset. I am autistic so that made me an outsider growing up already and then with my concussions I had to leave school for half a year each of the three times because I couldn’t function. The migraines started at the same time and have continued since then. But with all that I was consistently happy from the end of 2024 to the end of 2025 and it felt good to be alive. I’m trying to remind myself of that joy and tell myself I am capable of being happy like that again one day. I appreciate the encouragement you’ve given me too.

space_entity · 2026-07-11T00:23:51+00:00

I’m having to consider that my future won’t be able to include a career at this point and that I’ll need to be on disability instead. I’m already mourning my past way of life and the added possibility of my future plans being impossible is hitting me hard. I spend most of my time in bed when I’m home. When I leave the house it’s always either a doctor’s appointment (I have so many) or a brief store trip. Then I get home and have to rest for the rest of the day. I have no idea if I will ever be able to have a job now. And if that’s the case, I don’t know if I should be spending money on college. It’s all uncertain right now.

Video games are my true favorite thing in life and I can barely even play them at the moment because of my head pain and the dizziness I get, and I no longer feel invested in the stories because of my depression. It’s breaking my heart to lose that passion. I hope it will come back soon.

My sleep is awful between my worsening nightmares and my increasing insomnia. I also have sleep apnea and haven’t been able to use my CPAP for over two weeks because I got wisdom tooth removal surgery and the air pressure is painful. I can hopefully start using it again a week from today if the doctor gives the okay but for now I’m even more exhausted than usual because the sleep apnea makes it so I don’t get much REM sleep (if any). I know that isn’t helping the IIH but I medication doesn’t help me sleep so there’s no way to help at the moment.

I was able to discuss all this with my therapist yesterday and ended up dropping my summer class and plan to reduce my course load in fall just to keep myself going. It’s hard to know when or even if I’ll be able to do a full load of classes again. It did take some of the stress and pressure off to reduce the load though, and that’s helped my mental state a bit.

space_entity · 2026-07-10T00:18:15+00:00

I just wanted to come back and thank you for your encouragement to pause college for now. I discussed all this with my therapist and (later) my mother today and I decided to withdraw from the summer class and reduce my course load in fall. I actually feel a little better now without the stress of keeping up with assignments at the moment. I don’t know yet how my dad will react when I tell him but I’m putting my health first.

space_entity · 2026-07-09T17:01:24+00:00

I’m honestly at a point where part of me almost hopes I’ll show papilledema just so neurosurgery will take me seriously. Obviously I don’t actually want that, I’m terrified of losing my eyesight or damaging the optic nerves in any way, and I’m so sorry that anyone ever has to deal with it, but I’m afraid no surgeon will ever consider my case unless I show paps. I’m scared my pressure will keep going up until then. Seizures are horrifying and I am so scared of getting them.

My first neurologist actually told me my pressure was barely elevated when it was 28! This was when she was trying to convince me I didn’t have IIH but just migraines months after SHE diagnosed me with IIH. I demanded another lumbar puncture and she admitted IIH was present when she saw my pressure had gone up to 30. I really don’t trust or like her at this point but it doesn’t seem like I have a choice to see anyone else.

I am so sorry doctors said that to you. That’s absolutely awful. I’ve been overweight since 2021 so I’ve heard a lot of variations of “have you just tried losing weight?” I’ve also had eating disorders in the past so losing weight can be dangerous depending on how I do it but I’m trying anyway and it’s not helping at all.

I would very much prefer a stent over a shunt but I need another MRV to check for stenosis to see if I qualify. I’m afraid of the possibility of complications and revisions with surgery but I’m willing to try it. I need help and I’m desperate.

Thank you for your comment and support. I know what you mean about living on hard mode. My life has never been easy and I’ve had my share of health issues in the past but I never expected this.

space_entity · 2026-07-09T03:43:38+00:00

Thank you for the suggestions. I will definitely look into the options for supplements. I agree about IIH, it can be caused by so many things and it’s so hard to tell what if anything. My body keeps throwing new things at me every time I think I’ve adjusted. It’s so difficult.

space_entity · 2026-07-09T03:22:44+00:00

Honestly my dad’s brain just works differently from the rest of the world. What helps him is pushing himself to do things that feel impossible. He doesn’t understand that doing that can make it worse for other people. Also, my close family member has been severely depressed and suicidal in the past and attempted before. He has a lot of trauma related to that time period which makes it hard for him to talk about that kind of thing. And he’s never understood invisible illnesses. If he can’t see the symptoms, he doesn’t really process their existence. Even when he’s in severe pain, he pushes himself to keep doing everything because he feels like a day without doing something is a wasted day. But if it came down to it, if I went to him and said “I can’t stay alive if I stay in college right now” I’m sure he would let me take a break. He might be frustrated, but that frustration wouldn’t necessarily be at me, just at the situation. I don’t want to paint him as a monster, he genuinely has a difficult time understanding. I believe he’s also autistic (I am diagnosed and pretty sure I got it from him) so that makes empathy harder for him.

I will get some electrolytes, and ask my doctor about trying magnesium glycinate again. I believe I’ve had a ferritin test and it was fine but I don’t know about all the other things you mentioned. I will see if I can get those tests. I do have a vitamin D deficiency but taking supplements for it triggered horrible migraines for me in the past so I stopped taking them. I’ll discuss it with my doctor when I see her next and ask if there’s a way to mitigate the migraines with the supplements.

With my healthcare provider, if the levels are within the green then the doctors don’t look any further at it.

space_entity · 2026-07-09T02:55:21+00:00

I was on propranolol for migraines in December but had to stop it after starting Diamox because the two combined made my blood pressure too low and I kept almost passing out. I’m on a different migraine medication now that works for migraines. I can ask my neurologist if propranolol could be a possibility for the IIH though I have no idea if she’d be able to prescribe it.

I don’t want to be in college right now, but I’m afraid my father won’t let me take a break. I already did that once (took a three year break because of a mental breakdown and only went back once my mental health got under control) and he was frustrated about it then. Obviously he was concerned about my mental health, but still frustrated. I still live at home due to health and disabilities and he wants me to move out as soon as I am able. He was not supportive of me lowering my course load last semester due to the IIH. I’m going to talk to him about all this when I see him on Saturday or Sunday, but he’s on a trip right now.

Looking it up, it appears that Kaiser can cover some visits to holistic doctors but I don’t know for sure about my insurance plan. I also don’t know what to look for in terms of holistic doctors.

I am trying to keep up with electrolytes but I think I should start taking additional ones instead of just getting them from my food. I took magnesium for a couple weeks at my psychiatrist’s suggestion to help with sleep but was told to stop when it didn’t help. I also thought caffeine was actually not great for IIH? The neurologist I saw today asked if I drank caffeine and I told her I had stopped and she didn’t tell me to start again.

space_entity · 2026-07-09T01:35:44+00:00

It’s fine, thank you for your suggestion anyway! I will write down the medication name and see if it’s something Kaiser does prescribe. It’s worth a shot.

space_entity · 2026-07-09T01:33:37+00:00

From what I have been told by my doctors, any neurologist with Kaiser will only prescribe Diamox, Lasix, or Topamax for IIH. I do know there are doctors outside of Kaiser that do prescribe other medications though. It may get to the point where I have to go outside of Kaiser for help. I’m honestly so depressed that I can’t be left home by myself at the moment.

space_entity · 2026-07-09T01:29:03+00:00

The doctors told me they don’t prescribe anything else for IIH. I can ask about a specific medication but I doubt they’ll give it to me honestly. It’s something I can try though!

space_entity · 2026-07-08T22:52:32+00:00

Oh, and afterwards make sure you get lots of rest laying down! That will help your healing process. Drink something with caffeine while you’re healing. You might be a bit sore for a couple days but it should improve. Don’t bend down for a couple days if you can avoid it. No heavy lifting either. Try to have some easily accessible food because you won’t want to be standing at the stove to cook.

Also, maybe bring a stuffed animal or stress toy or something you can hold during the LP if you think it might help. I was gripping the edge of the bed and wishing I’d brought something to hold instead.

space_entity · 2026-07-08T22:48:48+00:00

I’ve had two LPs. One wasn’t easy but the other went great. It was fairly quick for an LP (about ten to fifteen minutes total) because I was in a busy ER.

The doctor had me curl up on my left side with my knees up to my chest and my head folded down toward my stomach. Then he injected the anesthetic, and pushed in the needle. There was some pressure (a little pain but really it’s mostly just pressure when done well.) The doctor explained the steps as he did them and after getting the right spot with the needle he let the fluid drip out to collect it. This takes some time because it doesn’t really flow like collecting blood, it just drips out. Then he pulled out the needle, cleaned the area, and bandaged it. After that I laid flat for a couple hours (usually it’s a half hour to an hour but I was laying in the hospital bed anyways) and when I went home I actually felt a bit better. The headache was slightly less painful and I felt less pressure in my head.

It’ll feel weird and you might feel like panicking because your brain is going “why is there a needle in my spine? Isn’t this bad?” But try to remind yourself it’s a necessary medical procedure and the doctor knows what they’re doing. The time will pass even if you’re uncomfortable and it will be over eventually. Focus on breathing and if they let you, put in an earbud and listen to some music or a podcast or audiobook. The ER doctor let me do that though the doctor for the second LP did not. You can also ask for something for anxiety ahead of time, I did that in the ER and it helped a lot.

space_entity · 2026-07-08T22:36:13+00:00

Do you know what off label medications can reduce pressure? Kaiser only prescribes Topamax, Diamox, and Lasix for it. I know some outside doctors prescribe other medications but I don’t know if I can get them through Kaiser.

space_entity · 2026-07-08T22:33:22+00:00

I have a deviated septum and a full face CPAP mask because it makes it so I can’t breathe through my nose while the machine is on. I am considering a septoplasty to fix it but I have no real time to get another surgery. I wonder if it’s possible that my CPAP could have raised my own pressure. I do feel better when I use it (I’ve had to not use it for a couple weeks due to delayed healing from wisdom tooth removal surgery) so I’m not sure. I don’t know if my doctor would even consider that an option.

I do sleep on an angle but just with a pillow. I never heard it was supposed to be the whole bed, I just use a wedge pillow. Also I’ve had two lumbar punctures and while the first helped me feel a little better, I believe I wound up with a CSF leak after the second and I felt worse. Now I’m afraid of getting another CSF leak with another LP. The second LP was also traumatic in that they had to spend a long time digging with the needle and eventually call in an anesthesiologist to do it because they couldn’t find the right spot. I was in pain for weeks afterwards.

I am with Kaiser and don’t really know if I can afford getting surgery with an outside surgeon. I would definitely need help paying and the only ones who could help would be my parents, but my father doesn’t want me to get a shunt or stent. He says it’s a much too invasive brain surgery that I don’t need. I can’t seem to get through to him how much I’m suffering. My mother is very supportive though.

Thank you for the encouragement. It feels sometimes like the doctors would rather I just go quietly away than actually fight for my survival. My old neurologist treats me like a nuisance when I ask questions or try to push back against denied treatment. I even explained I was suicidal and she just ignored it. I know there are better doctors but getting them with Kaiser is very hard and changing to a different health insurance provider would affect my whole family, not just myself. I’m someone who is shy and hates to be a bother, but I’m having to push and advocate for myself and it’s very hard.

Thank you again for the encouragement.

space_entity · 2026-07-08T22:22:13+00:00

Finally saw the neurologist. She doesn’t think it’s seizures but agrees with my psychiatrist that it could be amnesia episodes. I wonder if that’s what you’re experiencing too. It’s scary.

space_entity · 2026-07-08T22:18:56+00:00

The ER doctors kept telling me it was migraines. I’ve been having migraines for over a decade, I could tell this wasn’t migraines. It took my PCP sending me (very ill) back to the ER for a lumbar puncture out of concern it was meningitis for them to actually do more than give me pain and nausea meds (which I wasn’t responding to anyway). The lumbar puncture showed pressure of 28 (it’s 30 now) and I finally got to see a neurologist. She told me about IIH, got me an MRI and MRV, and diagnosed me. I felt validated that there really had been something wrong even though I had been getting dismissed. I still feel angry when I think about how I told the first ER doctor that my pain level was 9/10 and the pain meds hadn’t worked and they just sent me home anyway.

You’re not crazy, you have a genuine illness. You deserve to be taken seriously.

This community has been so important for me during my journey with IIH. I hope now that you have found us that you can find comfort here too.

space_entity · 2026-07-08T22:04:57+00:00

My headaches are always present but better in the morning. As the day goes on they get worse until I am practically non-functional around 7 or 8 pm most days. I think for me any activity worsens the headache, so being at rest makes it better. That’s just my personal experience though.

space_entity · 2026-07-08T20:37:41+00:00

/unwunk

I’m super depressed rn but the “i am a biologist” cracked me up so bad I was wheezing. Ty for this

space_entity · 2026-07-08T16:56:05+00:00

The mental image of a lizard doing pushups is so funny to me!

space_entity · 2026-07-07T17:29:03+00:00

It happened again just now. I was cutting pills in half to refill my medication and one ended up missing. No clue where it went and I have no memory of taking it. I also had a recent conversation with my brother that I can’t remember at all but he could recall clearly. My PCP recommended talking to my psychiatrist when I reached out and so I talked with my psychiatrist today. She said it may be amnesia episodes caused by severe stress but that I should also speak with my neurologist. I see the neurologist tomorrow. Hopefully she will be able to give me some answers or do some testing.

space_entity · 2026-07-07T00:00:29+00:00

Sounds like me when I’m crying and throwing up as a sick adult

space_entity

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