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Tony Only

Any help and ideas for treatment ? Hemicrania continua + hEDS

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Hi all, I wrote here in 2018 on behalf of a young girl in our finnish Cluster headache Facebook group (my post in this link). She was treated as a cluster patient but the diagnosis was not set. Now she has finally received a headache diagnosis for hemicrania continua but her situation has not improved at all. I will attach her post translated to english below if anyone has any ideas or suggestions what to do or try.

 

---translated message begins---

Howdy!

It’s been quite a while since I have last posted anything here, but I really am now at my wits’ end and do not know how much longer I will survive like this.

For background: my worst problem is 24/7 headache and more severe headache attacks that happen daily. And the vertigo and nausea that follow my constant headache.

I also very likely have hEDS that affects my overall health with symptoms it presents. My father has hEDS but I have not yet managed to get a diagnose although I fill all the criteria.

All my treatments have completely stopped at this moment regarding my headaches. I have visited a neurologist in january and I received my first diagnosis (hemicrania continua). The doctor was very appropriate and listened to me, and prescribed indomethacin. This medication was not suitable for me though causing nausea and vomiting. After this all the contacts have stopped. I am under the impression that I am waiting for a neurostimulation surgery but the situation is very unclear.

At the moment I have nothing that would help me with my pain so I am taking any suggestions for self treatments as well.

As years go by to me it feels I am getting worse, I have not even graduated from high school and I feel I am just a burden to this society, living with other people’s hard earned money.

I don’t want to be a parasite, I want to study and work. I want to earn my own money I can spend without feeling guilty. This idea just seems impossible with my deteriorating health.

I have been regularly fighting with public healthcare for over 8 years now and there is no end in sight. Generally I feel that no one wants to help me and my life is meaningless, when even doctors may treat me like an animal for slaughter.

So how do I pass this phase, how to carry on and not to feel like being a complete loser ?

What am I even looking for with posting this, I don’t even know myself, to release some bad mood and anger I have inside and to find support I guess. And I am sorry for my confusing text, it is hard for me to concentrate due to my aches.

I hope all of you are doing better in the limits of our pandemic and you are looking forward to nice and sunny summer !

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Hello Tony,

I know this is though... She said she tried indometachin, but did she go far enough to see if it actually works ? For hemicrania continua and paroxysmal hemicrania, indocin response is an absolute must otherwise the conditions are ruled out. So I would say, as long as there is no confirmed indo test, the hemicrania continua diagnoses is still unsure.

When I did mine, I was also very bad the first day I took it. I was very ill, and vomit the entire day and my stomach hurt terribly. But because it was so important to has this test done, I did a second attempt one week later, and what ? ... no side effects ! Just a bit dizzy and quite some stomach pain the first days. So there is a possibility if she try it a second time, the side effects will be less... it's worth a try. Another option is have indocin as an injection (if that is available in Finland, I don't know) but this way you bypass all the stomach and digestion problems it brings and with an injection, the patient is already painfree within 1 or 2 hours, while with pills, it takes a few days up to two weeks if you do it the first time. If I would be her, I would really try to get that indocin in my system somehow to see what it does.

Otherwise, for hemicrania continua and paroxysmal hemicrania there are unfortunately not so many options I am afraid. Topamax can work... but I don't know about anything else. I have been so bad myself for 8 long years and it is only since I got indomethacin that my situation has improved a lot ! But it is still a trade-off between the disease and this medication and try to find the best balance. 

I think she must also to find a good headache expert. Some are really good (try to look up some names from published papers) and if she documents her case really well, she can be surprised how fast she will be able to get a consultation.

Best Regards !

siegfried

 

 

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Indo is very hard on the stomach and many who take it take a medicine to protect their stomach. They should prescribe something to protect your stomach lining.

I am not surprised regarding your feelings. Any of the diseases we see here - different Headaches, can cause you to become depressed when you see no end in site for the pain that you are experiencing. Living with 'Life on Hold' is not easy. However, most of us find relief and figure out what, if any adaptations we can make to get our lives moving ahead again. It can and often does take time and can be terribly dis-heartening. 

By joining the community, you have found a whole new group of friends who 'get' your pain and frustration. They understand the mental burden that comes with feeling isolated and alone. They are the people who can help you with suggestions for pain relief and who truly feel your pain, anger and frustration. Use this resource by reaching out like you already did. It is there for that purpose too - so that you need not feel distressed or negative about reaching out. There is hope and there is life out there. We want you to have hope and live a full life. 

Just think, we all came together due to a terrible disease that most will never understand, feeling alone and pretty well ignored or deserted by the doctors who are supposed to help us. I truly feel that we have all been in that hole. And Clusterbusters and Tonys' Finnish site are both working to put people in contact and present data and personal information to help others get out of physical and mental pain too. They tend to go hand in hand with TAC's.

Hang in there!

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