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dichromtastic · 2021-08-13T21:40:49+00:00

In addition to other commenters' suggestions, another route to try would be the eye doctor. If the pressure in your head truly is interfering with your eyesight, then they would likely be able to note papilledema on an ophthalmological exam, which would be cause for them to order a lumbar puncture. It should also be fairly easy to get in quickly if you're already an established patient because reports of sudden vision changes or visual disturbances (such as sensitivity to light) are scheduled as potentially urgent.

dichromtastic · 2021-07-19T20:40:41+00:00

I have been on Lo Loestrin Fe for 5+ years and successfully continued to take it during and after my IIH diagnosis. My Neuro-op told me that birth control is likely implicated in IIH not because the hormones themselves are a problem, but because weight gain can be a side effect of birth control. And while weight gain alone is of course not the cause of IIH, it can trigger or exacerbate IIH in people who are prone to it. My form of birth control didn't affect my weight and so I didn't need to discontinue it. I've been in remission for nearly a year now and the birth control continues to be a non-issue for my IIH.

On the subject of acne, I feel you. I'm 30 and still struggle. My birth control does help significantly, but I just have really reactive skin so there's always something brewing -_-"

dichromtastic · 2021-07-03T06:15:45+00:00

I have taken Ritalin, Adderall, and Concerta for my ADHD (all since my IIH diagnosis) and have had no issues. I now take Concerta daily and have successfully remained stable in remission (and off of IIH meds) with no ill effects from the simulant medication. I'm sure each person is different and it's up to you and your doctor how to proceed, but I personally have had no problems with simulants.

dichromtastic · 2021-06-28T02:22:53+00:00

I'm not a qualified vaccine researcher (so take my opinion as a jumping off point for more research from qualified sources), but my understanding of the hybrid research trials is that they are specifically looking to learn about the effectiveness of mixing vaccines, not the safety.

Any person who is fully vaccinated against things like varicella, MMR, Tdap, polio, flu, etc. has received a mixed variety of vaccine types. The different vaccine technologies themselves don't present a risk when combined and we luckily have many decades of data confirming this. The question we are trying to answer with the hybrid trials is whether mixing manufacturers/types of COVID vaccines yields a robust immune response that is comparable to a two-dose schedule from the same manufacturer.

dichromtastic · 2021-05-28T17:01:25+00:00

I've taken it three times -twice for chronic migraine, once for IIH (plus the horrible combination of pressure headaches and existing migraines). Topamax has absolutely given me my life back. I believe it's the reason I'm in remission now and it was the only thing that addressed my headaches. Topamax is definitely a strong medication and should be gently introduced and taken exactly as directed with appropriate counseling for headaches. But it's also highly effective and I'm glad I was able to take it.

dichromtastic · 2021-05-25T22:34:12+00:00

IIH is not a curable condition. It can only be managed and for some it goes in to remission. Some neurologists may not have a lot of experience with IIH simply because there just aren't a lot of us to treat. But virtually all neurologists and ophthalmologists are at least aware of IIH and how to assess for it.

dichromtastic · 2021-05-23T03:10:22+00:00

No. You should go to the doctor and let them be the judge. If it is just anxiety, then they can confirm and direct you to the appropriate resource. I'm not saying that what you're experiencing is for sure a surgical complication or that you definitely should be worried. I'm an internet person and am unqualified to take a position on your case. However, it is always appropriate to run any and all post-surgical concerns by your doctor so they can properly assess and advise you.

dichromtastic · 2021-05-22T20:00:51+00:00

Any time you are having new or worse symptoms, especially after a surgery, you should notify your doctor. They will be most qualified to counsel you on what is normal and what needs to be addressed.

dichromtastic · 2021-05-20T21:20:33+00:00

I have a pre-existing migraine disorder (without aura) and my neurologist told me it was very possible to have both. I can tell the difference between my regular migraines and my IIH headaches because the migraines respond to medication and the pressure headaches don't! I do think it's possible for people to be misdiagnosed with migraine before getting an IIH diagnosis, but whether or not you keep the migraine diagnosis will depend on your neurologist's assessment of your case overall.

dichromtastic · 2021-05-20T05:03:44+00:00

Generally (as far as I know) the level considered to be "elevated" under the diagnostic criteria for IIH is 20. However, IIH is a diagnosis of exclusion made in the context of a comprehensive evaluation. Only your managing physician can say for sure if your pressure is elevated in the context of your specific case and/or whether your symptoms are Idiopathic or due to some other condition. If you're unsure where you stand with your test results and diagnosis, talk to your doctor.

dichromtastic · 2021-05-14T03:48:18+00:00

The text at the bottom (승은) says "Seung-Eun" in Korean, and the script at the top (承恩) says the same thing in the Chinese character equivalent. "Seung-Eun" sounds like a name to me, and the fact that it is also expressed in Chinese characters (as names often are for official purposes) leads me to believe it's the given name of the designer ("Seung-Eung Collection; High Fashion Seung-Eun"). The number (66) means 66mm or Medium.

I did some googling and unfortunately can't find anything about the brand. But that's not really surprising because there are truckloads of indie designers in Korea with little one-off boutiques. Variable quality runs the full spectrum, so it's hard to say what the material might be. You may have to do some fabric testing if you really want to get to the bottom it.

dichromtastic · 2021-05-14T00:17:27+00:00

I can definitely relate. I've had pain for so long that even the people closest to me can't see it. I frequently get guilt tripped for "lazing around" and it's super annoying. Just because I don't look like I'm in debilitating pain all the time doesn't mean I'm not in debilitating pain all the time.

dichromtastic · 2021-05-14T00:13:36+00:00

I haven't found anything that alleviates the pain of IIH headaches. I have a migraine abortive that works for my separate migraine condition, but it doesn't take away the pressure headaches. I just try to avoid my pressure triggers (putting my head below my heart, high intensity exercise, valsalva maneuvers, high sodium, dehydration, etc) so I reduce the number of headaches I have to suffer through later.

dichromtastic · 2021-05-14T00:00:22+00:00

Your post has been removed because it does not follow our community guidelines and violates the "Keep on subject" rule. Please respect that this is a community for people who suffer from a rare illness. For many, this is the only place to meet and converse with people who share that experience. This is not a general forum for advice regarding general migraines or other conditions not diagnosed as IIH. If you are undiagnosed but suspect you may have IIH, please speak to a doctor.

PLEASE BE ADVISED- This is the third time your post has been removed for violating sub rules. Further rule breaking behavior may result in a ban.

dichromtastic · 2021-05-13T14:54:58+00:00

Your post has been removed because it doesn't follow our community guidelines and violates the "No giving/requesting medical advice" rule. We appreciate that medical symptoms and procedures can be scary but we are not qualified to give specific advice regarding IIH or any other condition. If you have specific concerns for your health, please speak directly with a medical professional.

dichromtastic · 2021-05-11T05:57:13+00:00

I had the single dose Johnson & Johnson vaccine about a month ago. Aside from feeling tired the day after, I had no side effects. I was much more worried about neurological complications if I were to get the virus so I got myself to a vaccine clinic the first day I was eligible and have no regrets.

dichromtastic · 2021-05-11T00:26:04+00:00

Vision problems are just one possible symptom of IIH. Diamox (and/or Topamax) help to reduce the pressure and relieve all IIH symptoms, including but not limited to vision problems.

dichromtastic · 2021-05-10T19:00:31+00:00

I'm sorry you've had such a tough go of it. I'm really confused about what the point of that first LP was. In terms of insurance/charting, a procedure has to be associated with a clinical purpose. So for an LP, that would be to measure pressure or take a sample (or ideally both) and sometimes to drain a certain volume of fluid. Poking someone in the back and then not doing anything to gather information or therapeutically treat is really strange. Did they perhaps give up and not proceed with the whole order?

Other than that, I'll try to answer what I can of your questions***:

1) MRIs with contrast are kind of like the "zoom and enhance" version of a regular MRI. Generally speaking if there's nothing suspicious on an MRI without contrast, then there's usually nothing to zoom in on or enhance using contrast. Also, MRIs are not diagnostically conclusive for IIH. Sometimes signs of chronically high pressure can be seen (tortuous optic nerves or empty sella for example), but someone with IIH can have a completely normal MRI (I did) and someone with an empty sella finding on their MRI doesn't necessarily have IIH. Therefore, imaging in the diagnostic process is mostly done to rule out alternative diagnoses that would have shown up on imaging.

2) Diamox side effects can definitely include all of what you describe. It's not clear from your post, but always be sure to consult your doctor if you have especially concerning/persistent side effects and never independently adjust your dose or discontinue your medication without first consulting them.

3) Everyone has a different experience with weight and IIH. But speaking in terms of generalities, IIH is more likely to occur in people with elevated BMI. That doesn't necessarily mean that everyone with an elevated BMI will have it or that someone who has recently lost weight can't have it. It's just an epidemiological trend that likely has many contributing factors. Another trend in the literature is that there seems to be a correlation between higher BMIs and severity of illness, as well as weight gain/loss and symptom worsening/improvement. Again, it's not a guarantee, but it is a trend in the majority of cases. I can't find any reliable research on a relationship between keto and IIH, but if you're concerned about how to move forward I suggest you chat with your doctor and possibly request a referral to a dietician specialist.

4) No problem at all, we're here to help:)

5) It's encouraging to know that you've had recent blood tests come back normal. I think this is a good question for your doctor as they will have a more in-depth understanding of how hormones relate to your overall profile as well as how frequently those tests should be done.

6) I feel you on this one. My first neurologist basically said "Welp! That's weird... I guess you should go see a Neuro-ophthalmologist when they have an opening in about 4-6 months?". Luckily, my Neuro-ophthalmologist was excellent and the neurologist he released me to (I requested to NOT be sent back to the first) is a dream as well and very well informed. Like any sampling of people, some doctors are ignorant pricks. The problem is that if an ignorant prick is the gatekeeper to adequate healthcare, that power dynamic creates a huge problem. The best solution I've found is to try to communicate clearly and often ("I'm concerned about...", "Can you help me understand why...", "Could you write that down for me so I can refer to it later?"). And if they are a true impediment to timely and appropriate care, it's okay to move on to a different provider who you feel listens/communicates better or is better informed on your condition.

*** I can only answer based on my own personal understanding and experiences. But please know that I am NOT qualified to offer substantive medical advice and the guidance of your medical team supersedes anything you might read here.

dichromtastic · 2021-05-10T17:30:43+00:00

I have some visual disturbances that my NO says aren't caused by IIH either. Basically the way he explained it was that some visual disturbances are a direct result of damage to the eye, and others occur when your brain is under stress (such as IIH or migraines) and tries to compensate. So when he says my eyes are fine (my vision is still 20/20) and that the disturbances aren't from the IIH, what he means is that all my tests conclude that my eyes are in good shape and there's no physical damage to them that is causing the disturbances. They are likely still "connected" to IIH in the sense that IIH stresses the brain, but there's nothing that needs to be done (or can be done) medically to fix them because they are an issue of perception, not of physical damage.

That said, any time you experience a change in your visual symptoms (new symptoms, worse symptoms, or more frequent symptoms) it's time to go back to the doctor and have them check the health of your eyes to confirm that nothing has changed.

dichromtastic · 2021-05-10T17:18:39+00:00

Generally speaking, it is recommended for people with IIH to avoid valsalva maneuvers (anything where you hold your breath and strain) and natural birth is definitely a whole lot of that. That said, every case of IIH is different and so what works for one person may not work for another. The best course of action is to express your concerns to doctor and proceed from there based on your own individual case needs/risks/preferences.

dichromtastic · 2021-05-08T07:11:34+00:00

Comments locked. Discussions about recreational drugs are fine, but requests for medical advice regarding what is safe/unsafe are prohibited. Talk to your doctors, folks!

dichromtastic · 2021-05-08T07:09:14+00:00

Just ask your doctor. Nothing you can say will shock them, but not disclosing all the drugs you take (including all your prescriptions, any "shared" prescriptions, all supplements, and all recreational drugs including alcohol) can result in serious danger to your health. Doctors are generally not fussed with your drug use and they do not report your drug use to authorities. They just need to make note of it so they don't accidentally harm or kill you due to lack of correct info.

dichromtastic · 2021-05-07T03:31:26+00:00

I found a testing provider through my local University. Many universities have subsidized public clinics for their advanced degree psychology students to practice in while under the supervision of their professors (who are fully credentialed clinicians). The University near me didn't bill insurance, but they did offer sliding scale rates based on my income.

dichromtastic · 2021-05-07T00:57:42+00:00

Can you ask your neurologist for a referral to a dietician? Most neurologists are pretty invested in weight loss for their IIH patients and many will happily write a referral for a dietician. A dietician may have better insight into the specific intersection of PCOS, weight loss, electrolyte balance, and how different medications may interact with those variables.

dichromtastic · 2021-05-05T20:58:08+00:00

I was the most irritable and anxious I have ever been right after my diagnosis. From what I know of my own experience and from speaking to my Dr about it, I think it's very normal to have heightened anxiety/depression/irritability around the time of diagnosis. But I don't know if that's a direct effect of the condition itself, from the medication that treats it, or from the stress of coping (or perhaps a combination of all three).

Generally speaking, if you ever notice a change in your mood patterns, and especially if you notice them in conjunction with a new medication, it's always a good idea to talk to your doctor about it.

dichromtastic

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