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Not quite sure what route to persue next.

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#1 Thu, 08/11/2018 - 15:55
Jenny_t
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Last seen: 1 month 5 days ago
Joined: 08/11/2018 - 15:06

Not quite sure what route to persue next.

Hi. 

Im a 20 year old teaching assistant who was diagnosed, by my doctor, with cluster headaches a year and about 3 months ago. 

Since then I’ve been given so many painkillers and medication to try, but none have worked. I’m currently on verapamil with minor if any improvement, and imigran sumatriptan injections, which I have only taken twice (Boxing Day last year and another a few moths ago) however I have such a bad reaction to them (Not being able to stand, severe sickness, having to be carried and the feeling of the worst hangover of the century) that I’m petrified to use them and would prefer to deal with the pain then take it. 

After about a 3 month time off from getting the attacks, that was recently ruined by it returning again Sunday night and have been recurring on average of 2 at least everyday since. And between each attack I am left with a screaming and incredibly painful migraine. And have unfortunately been unable to return to work since after suffering an attack at work Tuesday morning. 

I don’t quite know what to do next and was wondering if anyone could shine a light on what to do next. I haven’t been back to the doctors for a year as they don’t believe I need to see a specialist or neurologist, however if I don’t get seen by someone that understands cluster headaches I fear I won’t be able to carry on my job. 

Any suggestions are appreciated 

thank you 

Jennifer Tubbs

Thu, 08/11/2018 - 19:36
rightsider
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Last seen: 2 weeks 4 days ago
Joined: 04/11/2015 - 10:39

Go on a ketogenic diet, if you think you're chromic! wink

Seriously! yes

Thu, 08/11/2018 - 19:38
rightsider
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Joined: 04/11/2015 - 10:39

Apologies, 'chronic' not 'chromic'. DOH!

Didn't av mi specs on. laugh

Fri, 09/11/2018 - 10:07
Val
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Last seen: 2 days 33 min ago
Joined: 21/03/2012 - 15:16

Hi Jenny

First of all you need to see a headache neurologist, because it appears from what you say that you have two headache conditions and the medication needs to be adjusted carefully and a headache neuro will know what is best for you.  Also your GP has not so far tried prescribing oxygen for you.  He should know from the BNF - the GP prescribing bible - that for cluster headache high flow oxygen is the second-line painkiller after the injections/nasalsprays.    Read this: https://ouchuk.org/basics - this document is under the 'Get Informed' button on the OUCH homepage.   It explains what your GP can prescribe for you, how to get it prescribed and also the importane of seeing a headache neuro.

There are several treatments that only a  headache neuro would know would be best for CH and the possible other condition you have, your GP is trying to his best, but he has missed our on one treatment that could have meant you would have suffered a lot less pain in the last year or so, and second he doesn't know the protocol used by neuros in treating cluster headache, and therefore he should have referred you earlier on. 

Good luck, get the oxygen prescribed for you, and get a referral to a headache neuro as described in the'Cluster Headache Basics document I put the link for.  If you want to know the nearest neuro to you, call our helpline. 

Best wishes

Val. 

Sun, 11/11/2018 - 12:02
Jenny_t
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Joined: 08/11/2018 - 15:06

Thank You very much for the replies. 

may I ask what a ketogenic diet consists of, only I’ve never heard of it before? 

I’ve always wondered if it was normal to have a constant migraine between every attack. The migraines are what I started out with, constant for 2 and a half months straight, the. The clusters started a few months later. But from what you’ve said I also agree that they are 2 separate conditions. 

As to trying oxygen, I’ve read about it and seen the positive effects of it. Originally in the appointment we spoke about the nasal spray, but hadn’t realised that upon filling my prescription I’d been put down for injections. 

since starting the forum I have changed gp surgeries, and I am hopefully getting an emergency appointment on Monday. 

thank you again for your advice. It’s nice to talk to someone who understands what I’m going through 

jenny

Jennifer Tubbs

Sun, 11/11/2018 - 17:01
rightsider
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Last seen: 2 weeks 4 days ago
Joined: 04/11/2015 - 10:39

First of all, I would like to say that Val's advice above is absolutely the way to go regardless of what I say here. However, if you are seeing a new GP on Monday then I would still STRESS THE NEED for the oxygen. I may be mistaken, but GP's can prescribe oxygen for clusters without the say so of a neuro, but they may reluctant to do so for a number of reasons. Print off some info from OUCH or the NICE guidelines for pain relief with cluster headaches and be prepared to argue if you meet resistance! As for the injections, they are much more effective than the nasal spray, but I can understand your apprehension. I was seriously 'needle phobic' when my clusters started and didn't particularly like the idea of injecting drugs into my body that can affect my heart. But you get used to them and if you haven’t got any heart problems then they are relatively safe. Also, the dose is much lower than the other options. That said, I only ever used the Imigran when the O2 (plus multiple ice packs around the head and neck, ice cubes in the mouth and cold Redbull) failed to work, or I was caught away from a tank. In both situations, I would always wait until I could take the pain no more. However, this may not be the best advice, but for me, they have never failed to abort an attack (apart from once when I accidently used a pre-used empty syringe!), so I always hung on until the death before I reached for the needle.

Before I waffle about the keto diet, I must stress again that you should follow Val’s advice. It is massively important that your cluster headaches are officially ‘recognised’ by the NHS and that you get the correct/appropriate support in place as soon as possible. You can always experiment with the diet later. I strongly suspect that the diet would do wonders for your clusters AND migraines, but it’s vital that you get the other support in place first.

As for the ketogenic diet, I’m a massive fan as it has transformed my health, wellbeing and put my chronic clusters into remission after 24+ years. I’ve spent the past week medication free for the first time in over 23+ years. I cannot even trigger an attack and believe me, without going into detail, I have tried! I have posted the details of my story/reasoning on a thread about the keto diet on clusterheadaches.com, on the ‘Medications, Treatments, Therapies’ message board. I’m on there as ‘Rightsider’ too, so you can see which posts are from me.
http://www.clusterheadaches.com/wwwboard2/index.html

As for what the ‘keto’ diet consists of, well, there’s bucket loads of information on t’internet. Google ‘what is the keto diet’ and use that search term on YouTube too. The best single website is dietdoctor.com. I strongly recommend you take a look. In short, you basically avoid eating sugar (simple carbohydrates), all refined carbohydrates (e.g. bread, pasta, cereals), carbohydrate rich foods like potatoes and rice and certain vegetables that grow underground like carrots. You replace the carbs (and calories from them) with fat from foods such fatty meats, butter, ghee, cheese, cream, olive oil, coconut oil, avocado's etc. In addition to the lean meats, fatty meats, cheese etc, I eat vast amounts of salad, non-carby veg, leafy vegetables and loads of eggs. If you decide to give it a go, then I can’t stress enough that you do tons of research. Many people make huge mistakes when trying the diet and fail to stay on it due to the ‘keto flu’, lack of salt or too many hidden carbohydrates spoiling the transition to being ‘fat adapted’. Google ‘becoming fat adapted’ too! Also, many people try the diet and fail to adequately replace the carbs with fat. This ends up with them being on a ‘calorie restricted’ diet and this usually ends up with them feeling tired and ultimately giving up. You do not have to restrict calories for the diet to work. I never go hungry and have managed to lose 32lbs as well, which is far more than I ever expected! Note: people gain weight due to insulin production, not calories. Excessive consumption of calories is the symptom, not the cause. So, do not fear weight gain. You would almost certainly lose lots of weight (depending on your starting point of course) and your appetite would drop significantly.

Last point: Do not fear fat! Well, certainly not naturally occurring saturated fats like animal sourced fat, coconut oil and avocado oil. Stay away from almost all standard vegetable oils apart from extra virgin olive oil. In general, unsaturated fats are bad. We did not spend hundreds of thousands of years evolving on unsaturated fats. We evolved consuming saturated fats. Why on Earth would they be bad for us!!! Crazy to read I know given what we’ve all been told over the years. But its true.

I hope that helps and apologies for going on a bit!

Kind regards

Graeme

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