A bit discouraged. My neurologist sent me to Cleveland clinic for a 2nd opinion

%d comments
  • So those are the latest drugs coming up and the devices all but Gammacore are available in USA . Gammacore should be approve in the next few months for cluster headaches in US .BTW anything they use for migraine can be used for NDPH .Hugs to all who deal with pain daily .

  • Actually there is a distinct difference between NDPH and migraine. Plus quite a few meds that work for migraine do NOT work for NDPH. The same goes for procedures. NDPH is the MOST intractable headache diagnosis there is.

  • Exactly!!!

  • Thank you for the info

  • Yes, so far I have found nothing that relieves my NDPH

  • Hi Hope... Just a quick side, before you get going on the B Vitamins, I would ask your Dr to test you (Labcorp) can do it... Test to see if you have MTHFR. It's a genetic mutation. I have both copies. There are MANY COMPONENTS to MTHFR but included.... Is if you have it your body won't be able to process any b vitamins. It requires you to take methylated B'S. I would check that first before you spend a lot of money on supplements, just to make sure you can process them. I was tested through my Functional Med Dr.

  • I have not been tested for the MTHFR gene, my doc already thinks i'm a hypochondriac. But i do make sure my B vitamins are from natural sources, just in case.

  • Julia, I think you can test independently through labcorp. But it's about the b's being methylated. Methalation is the key if you have it, like I do. I can relate about Dr's thinking your a hypochondriac. I figure a lot out on my own. Take it to my one Dr who is in my court and thankfully she confirms my thoughts. Other Dr's react opposite. www.mthfr.net

  • I appreciate this thread and everyone's comments about the Cleveland Clinic. My Dr, who it was obvious was quitting on me at my last appt, who also never diagnosed me, and who had been giving legit issue to the head pain based on my neck mri alone, suddenly flipped and told me I was normal. My husband was with me at the appt. She then said I could go to the CC in Chicago for a second opinion "but they will only say the same as me". After reading all of your comments, it feels like it only solidifies my initial thought after my Dr says that, which was... I should go to a place YOU ARE REFERRING ME TO??? WHY.... Bc YOU ARE connected to THEM, and I'll therefore get the SAME outcome??? Idt so!! And scene... Sorry about my rage... Lol

  • Definitely feel your frustration!

  • Yeah I think we all relate to that! Unfortunately :(

  • True

  • Matthew how are you feeling?!?! Still good?!

  • So far so good. Battling a cold but surprisingly the headaches have remained at a 1-2 even with all the sinus pressure. I have another treatment tomorrow. My cold has pretty much run its course, I hope. So I'm thinking tomorrow's session should be a good one.

    Thanks for asking. Hope you are doing well too. Sorry about the trouble your doctor, definitely frustrating.

  • Yayyyyyyy! I always look forward to your reports on how you're doing!! I'm so glad you're doing well, even with a cold!!

  • Thanks Billi! Hope you are feeling well too. Thank you for your posts as well.

  • Hey Billi-Jo, I've been thinking about getting the test -- just wondering if knowing you have the mutation has helped you get better treatment? Are you taking b-vitamins, and if so is it helping?

  • Sarah... Definitely... I found out through my functional med Dr. Knowing this info helps in many ways... Having both copies of MTHFR tells you you are genetically inclined to have a greater risk of heart disease and cancer. So my Dr said, we would focus on diet ...(on Amazon you can buy the diet book he has me on. It's about $20. It's called "the cellular healing diet), and supplements. But YES... If you have MTHFR you need a special type of vitamin B. Methylated vitamin B because that's the only kind an MTHFR body can metabolize. Again the kinds I take are by Thorne research, on Amazon... Called "methyl guard plus" or I also take "neurochondria" by Thorne too bc I have a lot of nerve pain and nerve related issues. To try to take regular b vitamins is useless and can irritate the system if you have MTHFR. Also a lot of ppl who have this, also have anxiety. Me! Did I answer you clearly? Ask me more if I can help I totally will

  • Thanks for all the info! Of course the big question is -- is it helping your headache??

  • I went to a 3 week pediatric chronic pain rehab at Cleveland clinic for my NDPH and it really helped!! It has allowed me to improve my attendance at school (I was out of school more than I was in) and it not only helps me deal with the pain but also all the emotional crap u have to put up with being in a pain all the time. I also met a lot of kids with chronic pain issues like me.

    While I would say don't give up looking for a cure, it doesn't hurt to learn some tools to help Handle the pain till then

  • Truly accepting my diagnosis & doing everything naturally possible has been my best outcome so far! Well I still take zonisimide. It's the last med! Other than that it's mediation, yoga, supplements, acupuncture.... But it's ok!

  • Awesome Lena. What would you say is helping you the most?

  • I would say all the emotional support helped me the most. I was really depressed and still deal with it today but they really helped me feel hopeful again. Know I know at least I have the tools to deal with the pain even if it doesn't go away