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Patients Autism Spectrum Disorder

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Member Carenity
Posted on

Living with this disease is hard. Basically, I have a fake brain tumor that causes a bunch of problems with my vision and headaches.

Does anyone know some relief for migraines, especially ones to turn to when all other traditional medicines don’t work?

Beginning of the discussion - 2/27/19

Idiopathic Intercranial Hypertension
Member Carenity • Community manager
Posted on

@Hidden username‍ I know many members have found success with acupuncture and forms of Chinese medicine to help their migraines. Have you had any experience with that?

Also, a member found great success with the Daith Piercing, which affects the Vagus nerve and has been show to greatly ease migraine pains. Perhaps you may want to look into that also?

Please keep me updated if you do try either one of these recommendations and let us know of the success.

Idiopathic Intercranial Hypertension
Member Carenity • Community manager
Posted on

@Hidden username‍ Here is the link to a testimonial where a member discusses the Daith Piercing. The member of this testimonial has Multiple Sclerosis, which one of the common symptoms is intense migraines. She tried the piercing and it alleviated the migraine symptoms.

Here is the link: https://member.carenity.us/testimonials/ms-daith-piercing-neurontin-and-other-treatments-55 

Idiopathic Intercranial Hypertension
Member Carenity • Community manager
Posted on

@Hidden username‍ Here is also the link to @Hidden username‍ 's discussion where she also talked about the Daith Piercing and its effectiveness for migraines: https://member.carenity.us/forum/update-on-current-status-of-ms/update-on-current-status-of-ms-511 

I would recommend reading through her testimonial and that discussion, and perhaps sending a private message to @Hidden username‍ for more information if you have other questions or concerns to the Daith Piercing.

Idiopathic Intercranial Hypertension
Member Carenity
Posted on

Im sorry Lee, may I ask what your qualifications are and how are you familiar with our condition?

Idiopathic Intercranial Hypertension
Member Carenity
Posted on

@Hidden username‍ ‍ ‍unfortunately with our condition, not all of our headaches are migraines, and a lot of them are started due to pressure changes and they feed off of each other. I have been using Botox for the last 8 years which has helped to at least keep me out of the hospital. It helps reduce the severity and the frequency. I have both of my daiths currently pierced, and I did notice they helped right after piercing, but I felt like the effectiveness reduced as the piercings healed and stretched. It definitely provided some relief and I know anything helps. Have you ever tried a tens unit? My neuro prescribed it for me before my surgery and it has become one of my most useful tools. It helps to relax the tension in your neck and shoulders with electro stim, which helps with the pain and the pressure. It also helps to interrupt the migraine while it is in progress. 

Idiopathic Intercranial Hypertension
Member Carenity
Posted on

@BeautifulDisaster i was just recently diagnosed within the past year. 

The first thing they tried to help the pressure was to give me a spinal tap, which left me hospitalized for a week. The headaches I suffered after the tap were 10x worse than the actual pressure itself. I was prescribed the diuretic Acetazolamide and the pain reliever Fioricet, which I’ve had no luck with.

I’m also in the middle of switching neurologists. My last one seemed very unprofessional and I’m going to the one my sister sees, whom she’s had very good luck with.

I’m very terrified of getting such an odd location pierced. Are they any other reliefs?

Idiopathic Intercranial Hypertension
Member Carenity
Posted on

@Hidden username‍ unfortuntately spinal taps aren’t just diagnostic for us. I lost count of how many I had before my surgery. My first pressure reading was over 37. I am sorry you ended up with a low pressure headache. They are brutal. For quite awhile, LP’s were the only way for me to get relief. I started on Diamox (acetazolamide), but I have had my shunt placed since 2015.

Fioricet is a joke and does nothing for our condition. Make sure that you are seeking a neurologist familiar and current on IH, and a neuro ophthalmologist, not just a basic one. They don’t understand our condition and the one I saw just kept parroting, I would be better with weight loss. Stupid jerk didn’t even bother to familiarize himself with my chart enough to realize I was only 137 lbs when I got sick. I had double vision for weeks without any help or explanation bc he couldn’t find anything wrong with my vision. 🤦🏽‍♀️

I have been very lucky with my neurologist, he has been a life saver. He is also the one who told me that the fioricet would do nothing for the head pain. He has helped me find an amazing team over the years, and you will need them in your corner. Find one that you trust implicitly and use them to build the rest of your team. Has surgery been presented as an option for you?

The daith is a cartlilege piercing so it is a little more painful. I have a few other piercings, and tattoos, so it wasn’t so bad for me. Ironically, it seemed to help the most the newer it was. The irritation and trauma helped put pressure on the nerve point and helped a lot with the head. Now I don’t even notice them anymore.

I would still suggest a TENS unit. It’s a portable little pack and you clip it to your waist or wherever. You attach 4 little pads on your neck and shoulders, and start a cycle. I usually do 60 min cycles. When I’m done I have more mobility and less pain in my neck and shoulders which helps relieve the pressure to my head. 

I also live and swear by yoga. The more tension I break the better I feel. I usually stick with a relaxing flow to help keep things moving, but it can get a pretty good sweat going if I kick it up a notch. I have made a lot of changes in the last year, including transitioning to mostly homeopathic.

I was on so many pain meds, that between them, IH meds, and all my meds to treat the side effects I was taking handfuls of pills all day. I was on so much pain medicine there had to be a warning not to take it if not used to it bc it was so much it would kill a normal person. None of it was helping, and I just kept feeling worse and worse. Finally I told my dr I wasn’t doing it anymore. I spent 4 months weaning off all the pain meds, then I dumped the lyrica, and slowly the others followed. I started using Sativa to treat most of my symptoms. I haven’t been on diamox for years as my body rejected it and now my pressure is managed mostly through my shunt, and I stopped the other diuretic as well. It works for me. I’ve found a level of stability I didn’t have before, and my body has responded better to treatment this way. It takes a lot of trial and error, and a great support system, but it is possible to live with this condition. 

Idiopathic Intercranial Hypertension
Member Carenity
Posted on

I know how this feels I have chronic regional pain Syndrome and are using a quell machine and it really helps you can control is from your phone track your progress and enter your pain levels.