Permanent headache solution?

[Lucy1996]

Thanks everyone so much for your comments, I don't feel so hopeless and alone ❤

The MRIS been ordered by a very good consultant who's trying to get to the bottom of my symptoms to rule other things out but I suspect he will come back to the conclusion that every other doctor has told me CFS/ME.

I feel like there is hope I just have to find something which works for me.

Xx

 

[Lucy1996]

in my case no its not every day and I am sorry to hear yours is, that sounds like quite a trial. I do have periods where it can be everyday--when i first had CFS and neck injury I had it almost daily and actually an atlas orthogonist type chiropractor helped get rid of it, Dr Paul Cheney a CFS expert told me in 2008 that if you have a neck problem or chiari malformation, either of those, they can get aggravated by the wax and wane of M.E. viral inflammation, so it can be hard to figure out chicken and egg, whether I re-irritate neck mechanically or viral titers maybe up when its worse I don't know, sometimes I think I do. I havent been able to tolerate manual physical work on my neck since the early 90s tho so that is no longer a remedy, too delicate. sometimes anti-histamines help some but they make the brain fog, which yes, I do have, worse. Its interesting tho, neck problems can cause a lot of problems and even trigger autoimmune, irritation of the nerves over time can effect immune system. This exfootball player talks about how getting work done on his neck helped him: http://www.chicagotribune.com/sport...on-85-bears-film-spt-0128-20160127-story.html

Thanks for sharing this x very interesting ... especially since my headaches come from so close to my neck. I do have neck ache as well although I think part of that pain is from my glands rather than my actual neck... but still going to explore this option.

 

[Lucy1996]

You have my sympathy. I've also had a constant headache ever since I went down with this illness 4 1/2 years ago. Fortunately it has got less severe as I have generally improved but it's still troublesome. In fact it’s probably almost tied with the fatigue as my most troublesome symptom.

Your headache sounds slightly different to the one I experience - mine is more like the one Snow Leopard describes. It's at the front of my head, going up one side almost in a line. I also have a pressure-like feeling, though this is less severe than it used to be. A neurologist that I saw said it had features of both a chronic tension headache and migraine, which I gather is a common description of ME headaches.

Like everyone else, it seems, I found that ordinary painkillers such as paracetamol and ibuprofen don't touch it. My doctor eventually advised me to stop taking them as overuse can actually cause or exacerbate headaches.

One thing that I have found helpful is propranolol – this is a beta-blocker that is frequently used to prevent migraines and/or chronic tension headaches. This reduced my headache severity by over 50% within a week or two of starting it. Other things I’ve tried (acupuncture and the dreaded amitriptyline) have been less successful.

It’s good that you’re getting a head MRI scan. In my case this didn’t show anything of any consequence, but it’s good to rule out other causes of your headache/other symptoms. Has this been ordered by a GP or by a neurologist/headache clinic?

Thanks for your help x I was on beta blockers for a while and I think it may have slightly improved my headaches but it made my brain fog (which at the time was my worst symptom) was worse so I came off them. I would consider going back on them though. MRI ordered by doctor originally but also by consultant at the hospital who I'm also seeing.

 

[bertiedog]

I am amazed and delighted to be able to say that just 25 mg Lyrica (Pregabalin) has got rid of my daily migraines/headaches which had been getting worse and worse. This has only happened in the last month having tried many other migraine preventatives.

If I feel one come on during the evening I just take another 25 mg and it gradually fades away. My migraines/headaches would come on within an hour or so of waking and eating.

Looking at the research I think it only works for about a third of people who try it and as I reported a little while ago I am homozygous for 2 SNPs in the GAD enzyme and Lyrica works on this enemy to enhance GABA and cut down on the glutamate.

Pam

 

[Hell...Hath...No...Fury..]

I am amazed and delighted to be able to say that just 25 mg Lyrica (Pregabalin) has got rid of my daily migraines/headaches which had been getting worse and worse. This has only happened in the last month having tried many other migraine preventatives.

If I feel one come on during the evening I just take another 25 mg and it gradually fades away. My migraines/headaches would come on within an hour or so of waking and eating.

Looking at the research I think it only works for about a third of people who try it and as I reported a little while ago I am homozygous for 2 SNPs in the GAD enzyme and Lyrica works on this enemy to enhance GABA and cut down on the glutamate.

Pam

Ahhh brainfog; yes pregagablin is the one that broke my migraine cycle too, dunno why i called it epilum.. This drug is fantastic for my migraines and nerve pain in general. Wish i could take it daily but it completely alters my consciousness, in a very weird way

 

[xrayspex]

Ahhh brainfog; yes pregagablin is the one that broke my migraine cycle too, dunno why i called it epilum.. This drug is fantastic for my migraines and nerve pain in general. Wish i could take it daily but it completely alters my consciousness, in a very weird way

Have any of you tried Diamox for headaches? I have not and am reluctant to because of my MCS, but I am sure at times that a type of headache I get is intracranial hypertension related,as its worse when I lie down during those times and Diamox indicated for such. I wish there was a way to try a speck of it during one of those times.

 

[PatJ]

type of headache I get is intracranial hypertension

A PEMF (pulsed electromagnetic frequency) device might help to reduce the hypertension. I have an ICES PEMF device that I tried on my head because some people find that it reduces inflammation and brain fog. It didn't take long to realize that it lowered my blood pressure (which is already too low.) I've read comments from others that indicated it lowered their BP as well. There's no guarantee it would work that way for you, but it might be worth a try if you could borrow or rent a PEMF device to try it. Be aware that some doctors recommend avoiding use of PEMF near the brain.

 

[xrayspex]

A PEMF (pulsed electromagnetic frequency) device might help to reduce the hypertension. I have an ICES PEMF device that I tried on my head because some people find that it reduces inflammation and brain fog. It didn't take long to realize that it lowered my blood pressure (which is already too low.) I've read comments from others that indicated it lowered their BP as well. There's no guarantee it would work that way for you, but it might be worth a try if you could borrow or rent a PEMF device to try it. Be aware that some doctors recommend avoiding use of PEMF near the brain.

hey thanks for the thoughts Pat---one caveat--is even tho the pressure in my head can feel very intense at certain times and there is a question around diagnosis of intracranial hypertension---I have pretty low b/p and was diagnosed 20 years ago with hypotension after a tilt table. meds or supplements that lower it too much more can make me feel worse sometimes. If you already have low b/p how do you cope with something making it lower and what is the mechanism that helps the headache with that device do you think?

Is it similar to this? Dr. Wood on facebook who has done research and treatment into fibromyalgia and cervical stenosis says this among his recs for treatment: " I would be remiss if I failed to mention Frequency Specific Microcurrent (FSM) as another potential mode of therapy, which might be considered as a non-invasive treatment distinct from other physical treatments I have listed. For more information on this unique option, consider looking at the Facebook page for Frequency Specific Microcurrent or visit: www.frequencyspecific.com "

I found a local place that does microcurrent in a PT practice but decided not to try it right now because have been trying acupuncture regularly the last few months.

 

[PatJ]

If you already have low b/p how do you cope with something making it lower and what is the mechanism that helps the headache with that device do you think?

I avoid anything that makes my low BP even lower. There are many ways to get a high BP lowered naturally, but getting a low BP to increase is quite a challenge. I've only found two things to increase my BP: Yohimbe and a FAR sauna. The Yohimbe interacts with the LDN I take and causes considerable BP fluctuations so I can't take it. The FAR sauna increased my BP by a few points but started to impact my sleep which is a sign that I'm over-exerting in some way. I need to try again with reduced duration and see if I can find a balance.

I don't know why the PEMF device lowers my BP. It's known to reduce inflammation though, so maybe that has something to do with it. This page has a lot of info on the ICES PEMF device. I also don't know if FSM and PEMF are the same, although they may be similar (I'm too brainfogged at the moment to read up on FSM).

 

[xrayspex]

A PEMF (pulsed electromagnetic frequency) device might help to reduce the hypertension. I have an ICES PEMF device that I tried on my head because some people find that it reduces inflammation and brain fog. It didn't take long to realize that it lowered my blood pressure (which is already too low.) I've read comments from others that indicated it lowered their BP as well. There's no guarantee it would work that way for you, but it might be worth a try if you could borrow or rent a PEMF device to try it. Be aware that some doctors recommend avoiding use of PEMF near the brain.

Hey Pat I went and tried frequency specific microcurrent (FSM) Monday at a local PT place that offers that and lazers and PT etc I am surprised to say it lowered my pain flare! It also gave me incredible brain fog that is slowly abating but Monday night my friends were laughing at me because I was so dense.
Do you recall what you heard about how PEMF might effect the brain?

 

[PatJ]

I am surprised to say it lowered my pain flare!

That's good to hear! I'm glad it helped the pain, but increased brainfog is frustrating. Checking your blood pressure before and after a treatment might show if the brainfog is related to lower blood pressure. Did you notice feeling unbalanced or dizzy?

Do you recall what you heard about how PEMF might effect the brain?

For many people it reduces their brainfog and increases thinking clarity. For me it reduces blood pressure (not good) and increases brainfog. This variable effect has me wondering if brainfog has different causes (ie. toxins in the blood stream, inflammation, high BP or low BP...) The linked article has more information about how PEMF affects the body.

The recommendation with the ICES PEMF is to start at low power/intensity for a short period of time to see how you feel and then work up to longer periods with higher intensity setting. The higher intensity setting means that the electromagnetic waves penetrate farther into the body. Maybe you would do better with a shorter duration and/or lower power setting?

 

[xrayspex]

That's good to hear! I'm glad it helped the pain, but increased brainfog is frustrating. Checking your blood pressure before and after a treatment might show if the brainfog is related to lower blood pressure. Did you notice feeling unbalanced or dizzy?



For many people it reduces their brainfog and increases thinking clarity. For me it reduces blood pressure (not good) and increases brainfog. This variable effect has me wondering if brainfog has different causes (ie. toxins in the blood stream, inflammation, high BP or low BP...) The linked article has more information about how PEMF affects the body.

The recommendation with the ICES PEMF is to start at low power/intensity for a short period of time to see how you feel and then work up to longer periods with higher intensity setting. The higher intensity setting means that the electromagnetic waves penetrate farther into the body. Maybe you would do better with a shorter duration and/or lower power setting?

I do have low b/p that can be problematic, in the 90s I had the tilt table test and was diagnosed with neurally mediated hypotension after that john hopkins study came out on gulf war vets with it. I dont think havefull blown pots. but that could be part of it, things that lower my b/p are not preferable. I will ask them about doing shorter sessions etc that is good point, with meds I have tried have to always take microdose. will check out that link, thanks!

 

[PatJ]

I had the tilt table test and was diagnosed with neurally mediated hypotension

I've never been properly diagnosed but I think that's what I have as well. The best description of what happens to me is 'orthostatic narrowing of pulse pressure.' I'm also sensitive to foods or supplements that lower BP.

 

[xrayspex]

I've never been properly diagnosed but I think that's what I have as well. The best description of what happens to me is 'orthostatic narrowing of pulse pressure.' I'm also sensitive to foods or supplements that lower BP.

interesting, thanks, hadnt heard about that before, or not that I remember....my life can be like Memento sometimes lol. I don't think my pulse pressure gets incredibly low, but could sometimes be near 20 probably more 30, will watch that, havent paid attention, thanks!

 

[PatJ]

More information about where I encountered the term "Orthostatic narrowing of pulse pressure" can be found here along with other interesting information from Dr. Bell.

 

[Lucy1996]

Hi guys I just wanted to update you that part of the reason for my permanent headache is chronic sphenoid sinusitis x

Although I also believe PVFS / CFS is playing a factor

 

[Crux]

Would you mind telling us what your treatment will be ? Thanks.

PS : Glad you got a diagnosis !

 

[Lucy1996]

Would you mind telling us what your treatment will be ? Thanks.

PS : Glad you got a diagnosis !

Thank you X
At first I had two weeks of steroidal nasal drops but they made no difference.

I have an eight week course of doxyclicine and then if I'm still symptomatic surgery to drain the sphenoid.

Also, it was diagnosed by CT and MRI scans

 

[Crux]

I have an eight week course of doxyclicine and then if I'm still symptomatic surgery to drain the sphenoid.

Wow, that's some serious treatment. Good that it's thorough.
I hope you won't need surgery.

 

[acer2000]

I just had a scan show this as well. Did the antibiotics work for you?