Katrina Posted January 31, 2019 Share Posted January 31, 2019 Good evening! I've been searching for a forum like this for a few years now?! This one actually seems to be active!! I have been diagnosed with SUNA syndrome nearly 5 yrs ago, have been on many medications. I have blackouts due to the pain so went into a London hospital last year and have been re-diagnosed with CH. I also have a paralyzed pupil on the same side as my pain! Can have upto 50 attacks per day and over 120 on a worst day! I'm looking to talk with ppl that have a similar situation and advice as to if I should go for a third opinion.... which is what my husband wants..... Hope to hear!!!! Quote Link to comment Share on other sites More sharing options...
Freud Posted January 31, 2019 Share Posted January 31, 2019 50-100+ attacks does not sound like clusters to me. 1 Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted January 31, 2019 Share Posted January 31, 2019 Welcome to the forum Katrina I have to agree with Freud here.....you might research one of the other TAC headaches called SUNCT........15 individual cluster attacks in 24 hours is the most frequent I've ever heard of! DD 1 Quote Link to comment Share on other sites More sharing options...
Katrina Posted January 31, 2019 Author Share Posted January 31, 2019 Thankyou both for your comments! Myself, husband and family are dissatisfied with the second diagnosis too! I have been either entirely dosed on so much medication or in so much pain for so long. Only the past 4 months after an accidental overdose to which I technically died.... have I chosen to struggle with coming off of some of the medication. However, I still have a lot of hits and continue to blackout (pain related)..... my diagnosis!!! I would be interested in other people's situations so I can compare when I go back to the neurologist?!! Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted January 31, 2019 Share Posted January 31, 2019 Hi Katrina, OuchUk.org has some fantastic background information on Clusters and the other types of headaches. The site actually used to be laid out a easier, not sure I like the new structure. In brief, when you are talking severe headaches or head pain, you are talking TACs - Trigeminal Autonomic Cephalgia. The Trigeminal nerve, as you may already know, runs throughout the face, and is associated with Trigeminal Neuralgia, Clusters, SUNCT, etc. SUNCT headaches are very similar to Clusters, but last 15-120 seconds on average and up to 30 an hour. The pain is very intense, and I wouldn't be surprised if you black out occasionally. SUNCT Headache Info Clusters, on the other hand, typically last 1-3 hours. It's important to get a good diagnosis. There are some good neurologists in London that SHOULD know the difference. I know how frustrating it is to have a little known condition and search to find someone else who understands. I hope we are able to help more, and it would be interesting to see if the remedies we apply here would also help you, even if your condition is slightly different than CH. One last thought. For just about every rule I've heard about that defines what a cluster headache is, I've also met at least one person for whom the rule doesn't apply. For most people, alcohol triggers a cluster, but not for everyone. For some, cannabis does, or sleep, or stress or lack of stress. When my clusters started, they were lasting from 45 minutes to 3 hours, as the textbook says they should. But since I've been 'busting', the methods we talk about in this forum, most of my clusters now last 30 seconds to a few minutes. A 30 minute cluster is a long one these days. So, my clusters act more like a SUNCT in that regard, but I only get about 2-3 a month. So, not like SUNCT. MoxieGirls first rule of cluster headaches: No two sufferers are the same, and just as soon as you figure yours out, it changes. MG Quote Link to comment Share on other sites More sharing options...
xxx Posted February 1, 2019 Share Posted February 1, 2019 (edited) Hey Katrina, Welcome aboard. I suspect you are vitamin D3 and magnesium deficient. These deficiencies can easily contribute to SUNCT/SUNA and the rest of the TACs. The Standards of Care recommended treatments for SUNCT are frequently Antiepileptic medications which are useless as you already know and do more harm with adverse side effects that any good in preventing these headaches... I usually suggest headache sufferers see their PCP/GP for a lab test of their 25(OH)D serum concentration. However, there in the UK, your NHS guidelines usually prohibit this lab test unless there's suspected hypervitaminosis D. Accordingly, if you run into this problem, telling your PCP/GP a little white lie that you're taking 50,000 IU/day vitamin D3 should do the trick. On the other hand, data from several sources including the online survey of 257 CHers taking the anti-inflammatory regimen have found most are vitamin D3 insufficient/deficient as illustrated in the normal distribution chart of 25(OH)D lab test results taken prior to starting the anti-inflammatory regimen. As you can see, the majority of the 257 CHers taking this lab test prior to starting the anti-inflammatory regimen had 25(OH)D serum concentration below 30 ng/mL or 75 nmol/L as its measured there in the UK. The optimum range for 25(OH)D that results in a decrease or cessation of CH is 80 to 100 ng/mL (200 to 250 nmol/L). Accordingly, obtaining this lab test now is not as important as having it done 30 days after starting the anti-inflammatory regimen. As most CHers have found taking a vitamin D3 loading dose of 50,000 IU/day for 12 days elevates their serum 25(OH)D into the therapeutic range rapidly and usually with favorable results, then dropping back to a maintenance dose of 10,000 IU/day, it wouldn't be a lie if you told your PCP/GP you've been taking 50,000 IU/day vitamin D3. Your best course of action is to do what many cluster headache sufferers (CHers) there in the UK do, and that's to order some 5000 IU vitamin D3 soft gels. I work with hundreds of new CHers a year and have recently found that Bio-Tech D3-50, a 50,000 IU water soluble form of vitamin D3 from Bio-Tech Pharmacal is faster acting and more effective at the same dose as the liquid soft gel vitamin D3 formulations. I've been providing information outreach to nearly 2000 CHers over the last eight years on the benefits of taking what I call the anti-inflammatory regimen. It consists of 10,000 IU/day vitamin D3, 400 mg/day of magnesium, 25 mg/day zinc, 3 mg/day boron, 1000 mg/day Omega-3 fish oil and vitamin A at RDA. The results have been amazing with 80% of CHers reporting a significant reduction in the frequency of their CH from an average of 3 CH/day down to 3 to 4 CH/week in the first 30 days. Moreover, 50% of CHers who start this regimen experience a complete cessation of their CH in the first 30 days. As SUNCT/SUNA are the evil cousins of cluster headache with similar pathogenesis, they should respond to this regimen as well. While you're waiting for the vitamin D3 there are several things you can do now to help reduce the frequency and severity of your headaches. These include hydration, drinking at least 2.5 liters of water a day. It sounds too simple, but it works. You shouldn't have any problems picking up magnesium, zinc, boron and vitamin A supplements. To this many CHers and migraineurs have added 300 to 900 mg/day CoQ10 (very important if you're taking statins), 1000 to 2000 mg/day Turmeric (Curcumin), liposomal vitamin C at 4 to 6 grams/day, Quercetin and Resveratrol at 500 mg/day. We've also found diet can play a key role in successful headache preventative treatments. The Atkins Diet or Ketogenic DIte are both very effective. They call for a complete abstinence of all sugars, wheat products and a very limited intake of carbohydrates or high starch food types. You can eat all the free range organic meats, poultry, eggs and wild caught fish you want. NON GMO organic green and colored veggies are also on the list of good things to eat. Restrict fruits to dark berries and grapes. A good anti-inflammatory diet should also include garlic, ginger, lemon, and apple cider vinegar. You can combine fresh ginger, garlic, lemon juice and apple cider vinegar with some extra virgin olive oil and blend as an emulsion salad dressing over fresh spinach, sweet onions, portabella mushrooms, boiled eggs and some smoked or kippered salmon. That's a great meal all in one... Take care and please keep us posted. V/R, Batch Edited February 1, 2019 by Batch Quote Link to comment Share on other sites More sharing options...
Freud Posted February 1, 2019 Share Posted February 1, 2019 Hi Katrina, sorry for the very brief post earlier, just figured I’d get the ball rolling. I really don’t think it’s CH based on the number of attacks. But a diagnosis is never made with such little information. Could you tell us how long the attacks last. What they feel like (SUNCT/SUNA is usually described as single stabbing, multiple stabbing, or saw tooth) , What happens when you try Triptans eg. sumatriptan, or oxygen the standard CH aborts. Have you tried lamotrigine or gabapentin, standard SUNCT AND SUNA TX. Your best bet for now is trying the D regiment that Batch has proposed, read the wiki, ask questions, request the lab test, and take a copy to your MD. Batch is a wealth of knowledge and can tweak the regiment to get better results. His scientific knowledge is incredible. As long as you can afford it you’ve got nothing to loose and everything to gain. To me as others have stated it sounds like one of the SUNCT syndromes but my knowledge of each is limited to an online CME I watched last year and can’t find. Sorry for the bold type it was unintended. Quote Link to comment Share on other sites More sharing options...
Katrina Posted February 1, 2019 Author Share Posted February 1, 2019 Hi guy's, thankyou all so much for your replies and advice!! I have some home work to do now!! Let me describe my symptoms in more detail.... I have what the neurologist calls an underlying headache that to me feels more like warm pressure on the top of my head. This I've had since day one! It does go away sometimes but I have the sensation there all the time. It does become very severe especially when I get a lot of (attacks)! And can last for hours or days. Now, my attacks as the Dr calls calls them feel like something is being stabbed into the right side of my head behind my ear and travels through my head and down my face. The weather does affect my headaches as does noise, big crowds, stress, being busy etc. As I said in my original post I also have a blown/ paralyzed right pupil. This blew the evening I was admitted to hospital the exact day everything started. However, the neurologist has said this is not connected??? I was on pregabline but it made me poorly.Here is the medication I am on at present... Lamotrogine, topiramate, venlafxine, domeridone, amitriptyline, naproxen, omeprazole, thiamine, vitamin b compound, sumatriptan. Still a cocktail I know, but I was on a lot more!! Any more advice would be appreciated. Quote Link to comment Share on other sites More sharing options...
xxx Posted February 1, 2019 Share Posted February 1, 2019 Katrina, That's not a cocktail... It's polypharmacy! No wonder you're having problems. Check your message InBox. Take care, V/R, Batch 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted February 1, 2019 Share Posted February 1, 2019 So I also don’t believe your blown pupil is random. Horner’s Syndrome is seen in both migraine and cluster HAs. It usually goes away Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.