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Nov 26, 2019 · CSF Leak Cause of NDPH? in Chronic Pain

It's been a while since I posted, but I wanted to update ppl with my latest. Background: I was originally diagnosed in 2010 with chronic daily migranes, but was re-diagnosed with NDPH (New Daily Persistent Headache) a few years later. I have seen every healthcare provider under the sun, and my neurologist has finally exhausted treatment options. The last "hail mary" path we investigated was whether I had a cerebrospinal fluid leak. Given that I get a little bit of relief from lying down, my neurologist thought we should check. If it was a CSF leak, there is a specific treatment for it, and only that treatment will resolve it. So the diagnostic test was a CT-guided myelogram. I was not prepared for this procedure by anyone, and I hope my experience will help someone else.

CT-guided Myelogram:
The radiologist set me up on the CT scan and got some baseline scans. Then he essentially performed a spinal tap (aka lumbar puncture), checked the pressure of my spinal fluid and injected the dye. I had to roll over a few times to get the dye all the way around my spine, and then they inverted the table (allegedly 10 degrees) to get the dye all the way up to my brain. Doc said, "Some people experience a bit of a headache when the dye reaches their brain." Ok, but what about the headache I already have? Well, what he should have said was, "You will experience skull exploding pain in about 5 seconds." I was in tears. It was by far the worst pain I'd ever been in. After that, I laid down on my back for a regular scan and I had to hold my breath at certain intervals. Then it was back to the recovery room where I was not offered ANY pain meds, but I was able to convince them to give me some ice packs which I used on my head. I hung out for a bit until the radiologist had reviewed my scans. No CSF leak was visible, but that didn't mean it wasn't there. Doc said he'd still recommend the fix, which is an epidural blood patch, since I have been suffering for 9 years. (short version: A blood patch is where they inject your own blood into the area around where the CSF leak is located and your blood plugs the hole.) After delivering the info, the doctor let me drive home. My pain level had decreased enough for me to drive, so I got lunch and started the hour-long trek. For the last 10 minutes of my drive, I was back to that skull shattering pain. I almost had to pull over, but pushed through it so I could just get into bed. Seven (7) days of complete bed rest followed a procedure that was advertised as "no recovery time required."

CSF Leak:
The problem was that the procedure that checked for a CSF leak actually CAUSED a CSF leak. Doc said it was rare, but that it happens. He said it should resolve itself in 2-3 days. (Yeah, right.) Later he said the average recovery time was a week. (BIG difference, doc!) The difference in pain from when I was standing to when I was lying down was immediate and drastic. I had no less than level 6 pain when lying flat, level 8 when slightly inclined on pillows and immediately back to that skull exploding 10 when I had to get up to use the restroom or attempt to eat dinner. I lasted about 5 minutes at the dinner table before I had to go back to bed. Thankfully, I had family to help me, but if I hadn't, the dog and I would have been in very bad shape. Ultimately the small leak caused by the procedure did resolve itself without having to perform a blood patch, and the doctor said the myelogram was a good diagnostic experience. Based on my experience post-procedure, he's fairly certain that I did not have a CSF leak beforehand.

Now, we are back to the shoulder shrugging. No one knows how to help me. None of the drugs, including Aimovig, have helped, but I'm going to go back to the chronic pain clinic to see if there have been any new ideas in the 6 years since I last consulted them.

Jul 8, 2019 · Migraine - Aimovig and Cardiology or Pulmonology in Brain & Nervous System

Re: Aimovig injections – since i have NDPH, not migraines, my neurologist had to fight to get approval for me to try it at all. Because of the cost, the Powers That Be didn't want to give it to me without the "correct" diagnosis. Ultimately, since nothing else has worked, I was approved for max 3 doses. The 3rd dose was a double dose. Since there were no positive effects, we didn't push for any further doses. My neurologist said if it was going to work at all, it would have worked by/with the third double dose. But my pain levels were unchanged. I recall that another drug I tried had similar heart racing side effects. I think it was Venlafaxine, but that one also had a bunch of other side effects that made it impossible to try long term. It also provided no relief or change. I've pretty much exhausted the list of treatments – even my long term use of CBD tinctures and capsules has not provided any noticeable benefit re: NDPH (plenty of other interesting benefits, as well as learning that I have an adverse reaction to THC). My sister still suggests electroconvulsive therapy to "reset" my brain. I never can tell for sure whether she's kidding (sisters, you know LOL), but with as often as she's suggested it, I think she's serious. I'll have to ask my neurologist about that.

Jun 17, 2019 · Migraine - Aimovig and Cardiology or Pulmonology in Brain & Nervous System

I think I may have talked about this already. So apologies for any redundancy. I have NDPH (about to have 9 year anniversary) and I used (without positive effect) 4 injections of Aimovig – one each month and then doubled on month 3. I didn't have the shortness of breath problem, but as with other meds I've tried, I did wake occasionally in the mornings with a racing heart. It was the most bizarre thing, as if I were waking from a nightmare, but without the nightmare. So my mind had trouble understanding what my body was doing. I'd start to get anxious because my heart was racing (a mind following the body thing) and literally had to talk to myself and remind myself that there was nothing to be anxious about. My doctor shrugged (another frustrating part of having a complicated and not well-known condition) and told me to call her if I had any additional symptoms. Insert eyeroll emoji here.

Apr 2, 2019 · New Daily Persistent Headache in Chronic Pain

Sadly, I’m one of those patients who didn’t get any relief from Botox. The first 2 times I tried it, my neurologist didn’t do the proper dosage at all the points. It had zero effect. When I got a new neurologist, he recognized the error and a proper treatment resulted in me feeling like I had a serious case of the flu. This was a completely unexpected side effect as the docs never told me about it. I felt better after a few days, but there was still no change to my NDPH pain level.

Feb 12, 2019 · New Daily Persistent Headache in Chronic Pain

I can relate. They called my headache migraines at the beginning too and it limited the kind of care I received and the compassion I got from ppl. I’m heading towards the 9 year mark in a few months, and I have had to remind myself that medicine is called a “practice” because going to medical school, specialty training, passing tests and getting a job doesn’t make someone a great doctor. Being proactive in the care of patients is still an individual personality trait. I’ve had numerous neurologists, too. Honestly the last two before my current one shrugged their shoulders and washed their hands of me when they couldn’t help me. You definitely have to be your own advocate on this journey, and it sounds like you are! Don’t give up! Take a rest and regroup if you need it, but then keep going. The one thing you *can* be certain of is that if you don’t try to find answers, no one else will. After every unsuccessful treatment I’ve taken a break and just focused on the basics of eating well exercising and trying to do things I enjoy. Sometimes that’s necessary for my body to detox off whatever crazy drug the docs had me on. Other times it was purely a mental break from the hunt. But always I know that I have a finite amount of mental focus to use, so when I run out of steam in one direction, I need to focus on something else for a while. I’ve learned a lot about how to manage my pain and how to spend time with friends this way. I’m still not able to work or even return to my pre-NDPH social schedule, but I’m a bit happier than I was. Good luck!

Feb 12, 2019 · New Daily Persistent Headache in Chronic Pain

I’m so happy for you and your son. I am one of those unfortunate ppl for whom it seems no medication on earth will work. So many of the drugs I’ve tried have side effects that make me *more* incapacitated than the NDPH. So it’s nice to hear positive outcomes like this.

Feb 2, 2019 · Chronic severe nocturnal hypnic headaches in Sleep Health

Let me first start by saying that I have NDPH, not migraines. So my use of Aimovig was more of a hail-mary, last-ditch attempt to find anything that might work. I was approved for 3 months of use, and my third month was a double dose. It made absolutely NO difference in the severity of my constant headache. So sadly, that is the end of that. Aimovig has now been added to the long list of pharmaceuticals that have no positive effect on my NDPH. I read on that some people were getting relief after 6 months on the drug, but I was never able to get more info from that organization. My neurologist said that if I didn't get relief in 3 months, there's no reason why 6 would be better – something about how the drug works, I think. So, back to the drawing board.

Dec 20, 2018 · New Daily Persistent Headache in Chronic Pain

Hi All, it's been a while since I've posted to the group. Recap for me: I have had NDPH since June 2010 and been on disability from my attorney gig since September 2010. It took them a few years to correctly diagnose me, and I have tried ALL the drugs with no positive effects (plenty of negative effects). I had a brief 3 hour period of significant relief from acupuncture in 2015, but my acupuncturist was never able to reproduce that result.

My neurologist got approval for me to try Aimovig, though apparently he got some pushback from the Kaiser powers that be. They didn't want to use this expensive medication on a NDPH patient, but given my history he was able to push it through. I just took my second dose. So far there has been no noticeable effect, and my neurologist is requiring me to document for him my daily pain severity.

I follow @NDPHReasearch on Twitter, and recently saw this tweet: "Talked to some folks recently who participated in the Aimovig and Ajovy trials for CM. In several instances, response was only noted after the 5th or 6th month." I've asked for more information in case I do need to be on it for longer than has been authorized so far. I'd definitely be interested to hear from anyone who has received some relief from the Aimovig.