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Cluster Headache Help and Support >> Cluster Headache Specific >> cluster cycle is over and I havwe no energy
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Message started by robertr on May 2nd, 2015 at 3:06pm

Title: cluster cycle is over and I havwe no energy
Post by robertr on May 2nd, 2015 at 3:06pm
Hi
I have had clusters for the last 30 years about every five years.  I completed my last cycle about 6 weeks ago and stopped the verapimil last week.  I am now constantly tired and fatiqued-I feel like  I have permanent horrible jet lag.  Has anyone had anything like this?  I saw my neurologist last week and he ran many tests and found nothing.  Any ideas?
Thanks

Title: Re: cluster cycle is over and I havwe no energy
Post by Bob Johnson on May 3rd, 2015 at 9:37am
There is nothing inherent in Cluser that I'm aware of which would explain the reaction.

I'm guessing that you are around 50. If so (or older), it's not uncommon to start experiencing changes in our body that comes with middle-age. Recovery of energy is often an earlyl sign, along with a decreasing tolerance for extended periods of activities which tap our energy reserves.

It's not uncommon to hear this kind of report from people who have recoved from a difficult medical problem and find it usefull to ease the pace of life until your body has a chance to fully recover. And don't estimate the energy drain which is associated with emotionally demanding conditions.

Title: Re: cluster cycle is over and I havwe no energy
Post by bcsanders on Jul 2nd, 2015 at 8:41pm
Robert,
I have had cluster for about 20 years and like you mine come every 4 years.  Based on the posts I read on this site I consider myself lucky they come every 4 years for about 1 month to six weeks.  Guess I am just glad to know someone else who has this every few years cycle.  I can tell you, as most people on this site can probably attest, I am exhausted during the cycle but when they leave they are gone.  I think the other person had it right - you are getting older, during a cycle you are probably not taking care of yourself, and you are on drugs and in lots of pain.  Your body needs time to get back to normal.    I know for me, an overall healthy diet and some hard exercise works wonders when not in cycle.

Hope you are feeling better by now.

Regards,'

BCS

Title: Re: cluster cycle is over and I havwe no energy
Post by Peter510 on Jul 3rd, 2015 at 3:00am
Hey Robert,

I'm 58 next month.

I feel exhausted all the time since I turned chronic about 2.5 years ago. But the tiredness has increased over the life of my Clusters (14 years).

In the early days I would get an episode and as soon as it was gone I was fine. Gradually, over the years, my ability to recover got less and less and I put it down to age and a build up of weariness just fighting the beast for so long.

Here's a suggestion, which I find helps get the energy and appetite back to some level of normality.

Fosfor Tonic  200ml
Phosphorylcolamine 5% W/V

Phosphorylcolamine is an amino acid complex occurring naturally in many body tissues. It is required in the body as a substrate in the synthesis of phosphorus and nitrogen to the body as essential  dietary supplements.
Fosfor contains phosphorylcolamine, provides a supplementary source of this amino acid complex in order for the body to naturally replenish its phosphorus and nitrogen levels.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

This is the brand available in Ireland. If it's not available where you are you could take the description above to your Pharmacist to see if they have something under another brand name.

My wife used it following extensive surgery over the last 2 years and swears by it too.

If you do try it, I'd be very grateful to hear your feedback.

Best of luck.

Peter.

Title: Re: cluster cycle is over and I havwe no energy
Post by blacklab on Jul 3rd, 2015 at 4:44am
Robert,
         the only thing I could comment on, would be, I felt the same way whilst on verapamil !
I'm in the process of weaning off after about 8 months full time, but a very low dose compared to others, but I noticed it dramatically and had to adjust accordingly while on it.
They say it takes about 10 days to leave the system, if you were on a high dose, that could still be the issue ??
Also, I remember well, feeling absolutely smashed ! after a cycle ends for a week or two, I mean, if you think about it, the drugs we pump into ourselves, the trauma of a cycle, that's a lot of pressure on the body !
give Peters remedy a go !
might just be a case too of your body re cooporating !
But if it continues, get yourself in to your doctor for a check over just to be safe
all the best
colin

Title: Re: cluster cycle is over and I havwe no energy
Post by Mike NZ on Jul 3rd, 2015 at 2:09pm
Totally agree with Colin's comments.

I've had similar experiences with preventives, verapamil for CH and propanolol for migraine. It is amazing the difference once you've been off them for a while.

There is also the impact of the stress of a CH. Whilst we can handle each one, there must be an accumulative effect from multiple ones, especially when you are chronic.

I'd also agree that getting a doctor to check things up is also worthwhile. We can't and shouldn't assume that everything is down to our CH.

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