I ve never felt so defeated and helpless I saw my neurologist today after a 3... — New Daily Persistent Headache

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  • Claire he didn't suggest opiates I asked about them because I'm tired of the pain being so bad all the time and I can't cope with it and want some relief. My gp had written to him saying I had asked about them and Matharu said that he understands why I want to go on them because I'm in a lot of pain. But it isn't his suggested method of treatment. But I've basically tried everything he has to offer me.

  • Thanks for that Sian was a little worried he had suggested them. I'm allergic to most but my consultant up here has said that they create more head pain long term. Have u tried reiki and reflexology and hot stone massage? They help me to relax which can help me manage pain better x

  • No don't worry he hasn't suggested them. I've tried reiki didn't help, and I like massages but it doesn't help the pain though x

are we allowed to talk about how mushrooms have helped cluster headaches — Cluster Headaches Exposed

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  • well see I delayed adding you because of your name.but I thought I'd see how it goes, and within 1 min of adding you, you start this stuff about freedom of speech and mushrooms.The point is, I don't mind people talking about their personal experience, but there are other groups who focus on that and people can join those groups to discuss all the merits of using mushrooms. I'm not gonna go off about freedom of speech and freedom to create my facebook group with certain rules of respect for all and respect for the page and group I created. I've explained many times that this group's primary purpose is support. However, I've also seen people who are relentless in trying to push their views on hallucinogenics and also defensive in their discussions about mushrooms. So no, sorry but I already pointed out that if people want to find out more about mushrooms they can go to clusterbusters, but not here. Thank you for respecting this group's rules.

  • He was just posting on another group and people were getting tired of him going on and on about mushrooms.. He does not suffer from ch nor does he seem to know much of anything about them. FYI

  • I checked his page. Now I see why he does this in groups. He sells mushrooms or mushroom seeds as a personal business, so he's trying to make money off of our pain. Anyways, I took care of it. :-)

I got the referral I am happy bout this which is sad because I am happy to... — New Daily Persistent Headache

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  • I understand Michel, I have only had NDPH for 3 1/2 years, I can't imagine what you have gone through for the last 13 years My prayers to you!

  • Keep in mind that I love to hear when one of us finds a great relief if not a permanant cure to NDPH.. which could be your case Sarah.

  • Thank you Michel Laparé

Hi all When having and attack or just after just anyone have a pain or ache the... — Cluster Headaches Exposed

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  • Sometimes I do, but I think it may be tension from clenching my jaw during the attack? I went to a cranial osteopath a couple of times - helped a great deal. But as far as immediate relief, self massage from the base of the neck up to under the skull brings a little bit of relief.

  • Its been going on for so long for my husband that the left side of his neck / shoulder is higher than the right side and it looks like it has more muscle. I think its because of all the clenching like Gilliam said. I am going to send him for a massage, cause the ones I give him dont seem to do to much. Hopefully it will get some of the tension out.

  • Oh my gosh, my son is the same way. His shoulder on the left side is now up and higher than the right side. He hadn't realized it til I pointed it out and he says that's where his pain starts before it moved to his neck and jaw tightening. Hmmm.....

— New Daily Persistent Headache

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  • Have they done an LP to check your opening pressure?

  • yea, I have had 2 LP, the first one I had a seizure and the second one, I don't remember the number though.

  • I was diagnosed seven years apart….believe it or not I was diagnosed with hashimotos 6 weeks postpartum with my son and then 7 years later with NDPH 6 weeks postpartum with my daughter. I heard that there was a link but I will have to further investigate. I take a very low dose of levothyroxine and my levels have never changed.

I had migraines since age 10 but recently smh they hav become chronic I fell... — New Daily Persistent Headache

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  • The med that works the bests for me is metoprolol er (beta-blocker). It was prescribed by a cardiologist for rapid heart rate. Interestingly it was medications prescribed by my neurologist (nortriptyline and butterburr) that landed me in the cardiologist office.

  • I Have metoprolol for tachyardia and you right sometimes it has taken.away My headache but it made me blood pressure drop fast one time had a panic attacks hands got Núm couldnt breathe

  • Did you take the extended release version? I had problems with bp dropping too much with propranolol. I don't have this problem with the extended release metoprolol. I think the non-extended release versions can cause fluctuations in the blood levels of the drug. What dosage did you take? I only take 12.5 mg (half of the smallest tablet) Hang in there; it took me 9 months to nail down these headaches with the right medications. I also take b12, b2 and magnesium.

Hi everyone. I m wondering if anyone here has ever heard of or used migrastick — New Daily Persistent Headache

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  • I love it when I am starting to get a migraine!

  • Hi Supreet, we have a different brand in the UK and I've tried it. It gives a little relief but never enough to take the migraine away. If I need to sleep when migraining and I use it, it usually helps xx

  • 4head is a balm that's sold in every pharmacy in the UK, and I swear by it. 4head isn't peppermint oil, it's lanolin. It doesn't 'get rid' of headaches... it acts as a cooling, soothing sensation for muscles that are hot or tense. It isn't gonna get rid of stinging pains at the top of my head, but it does wonders to sooth my forehead. I take it every day, some days I put it on every 20 mins, it doesn't state that there's any maximum dose since it's a natural remedy. I wouldn't have made it this far without my 4head!

    Oddly I'm actually taking peppermint oil currently to treat the side effects of my main prescription headache drug. It hasn't had any effect on the headaches themselves though.

I keep seeing people saying their headaches are 9 10 I am wondering what that... — New Daily Persistent Headache

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  • Thanks for the scale. I had meningitis when I was a teenager, so I feel that my scale is skewed. That was the worst pain I've ever felt period. I had a headache all over my head, and excruciating pain in the base of my skull from the spine pushing on the skull, I think anyhow.

    I cancel stuff all the time, or just don't take on any unnecessary things outside of work. But, I almost never miss work at my job due to it, even in pain.

    Usually I put a 1 or 2 on my journal, but I think that I'm going to change how I read my headaches, I'll use the scale above. I feel like when they said to do the journals it should come with a better idea of what to score pain at.

  • My clinic has a scale with descriptions similar to above and that made it easier for me. What I did call a 2 was actually a 4 on their scale and when I say 8 they know I mean I cannot function at that point.

  • For me the pain is debilitating, making it hard to do anything, even cope. I have memory loss in conjunction with pain, so makes it hard to deal with anything or anyone. I am a single mom so I have to keep going and can't stop because I hurt. I know this probably doesn't help much.

Hi. this is a bit of a pathetic painful rant — New Daily Persistent Headache

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  • Xxxxxxx Yzzzzzz!

  • NDPH is a diagnosis under chronic headache. There are lots of adults with migraines who are on disability. They don't have abnormal scans either. Getting disability can sometimes take several attempts. Your neurologist should be they key to helping you, don't give up! In the meantime, prayers for all of you suffering! My heart goes out to everyone suffering!!

  • Also, big hug to you Hannah!

Today Is my firs anniversary with ndph and I m in all time low I feel terrible... — New Daily Persistent Headache

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  • Hey Everyone, I wanted to thank each one of you for your kind words on this personal nightmare that we all share somewhat. I know, that there is always worse and someone is in a worse place that I am(not many I think), And dont worry about me checking out , Im too chicken shit for that. I'm very good with pain, i can handle a lot, what my problem is how this thing has handicap me in my life, I like to live it to the fullest and now I cant, thats what gets to me more than anything else.

  • Good to hear back from you. I was getting worried with the near suicidal statements you made. The only way to deal with a chronic illness is to accept it. You can still live your life to the fullest; you just have to adjust what you define as full. There are always people worse off than you. When I go to the pool to swim I am often frustrated that I can't kick very well due to my chronic back problems but then there is this lady that often swims next to me that only has one leg.

  • Cesar, I go along with Bill's comments. Must say first that I'm as well so very glad you're giving us an up date. I do believe that frustrations that accompanies NDPH isas much if not worst than pain. I too have almost no more social life. I made a point after 13 years to accept my new life as such. My wife has her friends and her activities without me and that's OK. I accept it. We do meet with family's accasional diners and that's about it. I used to and still do more now compare my situation to others and I easyly find worst than me. I know words are words : easier said than done ! Keep posting Cesar, it's nice to know how you are, we care.

Has anyone else in the UK been blessed with the good news that the suppliers of... — Cluster Headaches Exposed

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  • Ok thanks

  • Good luck!

  • where the doning it to me! and im not at all happy about it to,being as the temputure change,im on vertab,but im starting to get the pain a fking gain sorry about the french

    its just a good job i stocked up and took advantage of the situation befor the cut backs

Went to a doTERRA essential oil seminar this afternoon My pain level is... — New Daily Persistent Headache

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  • oh, okay I use Lavender peppermint chamomile and camphor oil.

  • Xxxxxxx Yzzzzzz have the oils ever gotten you to a pain free state, brought your baseline down or are they just helpful for migraines? From your link, it looks like you sell the products. Thank you for the info.

  • I educate on the use of oils. All purchases are directly through the company, but they want everyone to have a sponsor so that you have a support system when you need help.

    It is hard to describe, but I have had brief moments of what seems like pain free or clarity that I have never had before starting the oils. I have not found a pattern yet, but I am paying close attention to them when they happen. I think my baseline is generally the same at this point and I do not have migraines, but I have heard many testimonials related to migraine. My sponsor became convinced on the healing powers of oils because of the effect they had on a migraine 5 years ago.

Hey Peeps when I have previously had cluster headache cycles they have... — Cluster Headaches Exposed

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  • My current cycle started out with stuffy nose, tingly hair, and little shooting pains that would come and go... all on the right side. This lasted a few days and then full blown clusters were back. Get O2 if you don't already have it.

  • Thank you, I'll see if I can get some

Has anyone had similar headaches to NDPH from Celexa My Dr said that it could... — New Daily Persistent Headache

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  • My daughter tried Celexa for NDPH and it made her head pain worse. While on it, she got what the doctor called "ice-pick" headaches that she had never gotten before.

  • SSRI's and SNRI's are notorious for having headache in their side-effect profile. If you need an anti=depressant, the tricyclics, e.g. nortriptiline, are a great choice because they are also used as a prophylactic for NDPH and migraines. If not this, your other two options are: Wellbutrin (works on dopamine) and the MAO inhibitors (which have many dietary restrictions).

  • Getting off the Celexa, I think the headaches are worse actually. We'll see I'm going to give it at least a week before I start back with the Nortriptyline, in addition to Cymbalta...

Does anyone know how many classes of Nutrition are required to be taken by a... — Cluster Headaches Exposed

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  • All I've been told is that I should go on a High Fat diet for my epilepsy. Tried it, all that happened was I gained a lot of weight. Other than that, my husband who has clusters, was told caffeine would work, but for him it made it worse. I dont really trust doctors when it comes to nutrition, all they seem to want to do is give you more pills. Let me know if you actually hear what they actually have to take, I'm curious now.

  • Consensus on the other pages I posted this on was ONE class in pre-med. Any more than that is if they took it as an elective.

  • Nutrition naturally may improve overall health and via that affect cluster headache but since our condition is born on hypothalamus it's little we can directly affect with nutrition. Herbal protocol may share some light on the subject though

    https://sites.google.com/site/hortoninneuralgia/re surssit/englanti/liquorice-root-protocol

Anyone on here had any experience with eliminating condensed tannins from your... — Cluster Headaches Exposed

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  • Perhaps you can challenge these foods before your cycle to see if the frequency lessons.

  • Hi Bonner. I've tried every diet under the sun to see if there's a way to reduce my CH, or at least identify a trigger. Sadly, I've had no luck... although, liquid magnesium does seem to stop the CH waking me up in the middle of the night (although doesn't abort an attack). Thanks, though - what doesn't work for me will hopefully work for someone else!

  • I have a list of food I can't eat which consist of almost EVERYTHING :( ...histamines ..tannins..etc I could go on an on...when I have so many intolerances an allergies.. It drives me crazy...I'm trying to get approved by nutritionist so I we can hopefully find an answer..something inflammatory for sure....Fruit is very bad I ate watermelon ended up in hospital thought I was having a heart attack so of course they put nitro under my tongue :( big mistake...made a huge headache only bigger..I know this too shall pass....but I sure wish I could eat something without my head triggering an body inflaming...hugs luv prayers everyone