October 22, 2014 at 2:58 am #739
I am new to the group. I have had POTS for 18months, been diagnosed for only two months so I am still new to it all.
I have been suffering with real bad head and neck pain for the past year and wondering if this is just normal POTS or could it be something else on top of that? I know headaches and migraines are common in POTS, but because it’s pain in my neck to I am thinking could it be something else as well?
Any advice would be greatly appreciated,
Sarah (UK)October 23, 2014 at 12:38 pm #5069
Do you know what triggered your POTS ? Have you ever had a head or neck injury for example ? see my post at:-
Have you noticed any particular positions, tasks, or preceding events that trigger the headaches ? Are you hypermobile ? If you can get to the root cause of your POTS, you have a better chance of dealing with it more effectively. If your joints are hypermobile, for instance, you may be suffering from slight ‘cranio-cervical instability’ (CCI). At the back-end of this one, I mention the Philadelphia collar, CCI and why you should avoid flexion:-
Can you describe your headaches – where on your head, type of pain/discomfort, how long it lasts, if anything relieves it ? You may have a few types, I certainly did. Have you had a brain MRI by any chance ?
(UK)October 24, 2014 at 6:39 am #5075
Thank you so much for your reply.
Unfortunately I don’t know for certain what triggered my POTS, at the time I was working a lot of busy hours on my feet and was under a lot of stress so have just put it down to that. I haven’t had any head or neck injury’s.
I haven’t really noticed anything that brings on my headaches, I have them nearly all the time, there’s a constant slight pain/ache. But most days it is very bad, I get all sorts of headaches, sometimes it feels like my whole head is in a vice, sometimes behind my eyes and forehead, sometimes the base of my head and neck, sometimes both of those together. It often feels like I have a hat on. Nope, I’m not hypermobile. Only sometimes by laying down it helps with the headaches, not always though.
I have had a brain MRI but that was when I first become unwell, before the headaches started.
SarahOctober 24, 2014 at 3:50 pm #5076
You say you were busy working, did that involve a lot of looking down ? Also when people are working hard and over long hours, they fail to eat properly – would that have happened in your case ? Stress sure messes up the body chemistry.
Did you suffer stomach problems by any chance ? Did you regularly take antacids or painkillers ? I am curious because these, over time, deplete magnesium, which can in itself cause headaches (and migraines, incidentally). Check out the info on Magnesium:-
Your description of the head pain/discomfort is familiar and quite typical in our community, very suggestive of CSF (CerebroSpinal Fluid) build-up/flow problems. Your eyes can tell you a lot about the condition of your blood vessels and can also indicate whether the pressure in your head is too high, see post at:-
Venous drainage (from the head) takes a different path when you are laid down, so this, along with gravity being on your side, may be the reason why laying down sometimes relieves your headache. Which kind of headache is relieved by laying down, have you noticed ?
(UK)October 25, 2014 at 6:19 am #5078
Yes I was a hairdresser so it involved a lot of looking down, had done it for 10 years. I did manage to grab something to eat really quick even though I was very busy, it normally meant grabbing a bit of a sandwich and some crisps here and there in between clients, I barely used to drink though at the time.
I didn’t suffer with stomach problems, only constipation at times. I wasn’t taking any painkillers or antacids leading up to becoming unwell.
How would I go about seeing if it could be CSF that is causing this problem? I have looked online and it says they would need to do a lumbar puncture, the thought of that scares me a bit knowing the risks. I have just looked on your link regarding looking at the eyes, are most optitions familiar with CSF etc? Just you know what its like trying to get things done over here, with doctors etc giving you funny looks and thinking your crazy lol.
The headaches that are relived when laying down are the back of head and neck pain headaches.
Thanks so much for all your help, I really appreciate it 🙂
SarahOctober 25, 2014 at 8:03 am #5079
The salt from your crisps and also from the bread probably helped you avoid stomach problems (as it helps your stomach to produce appropriate strength stomach acid). I can see from the fact that you eat bread too, that you don’t have overt gluten issues, which is another bonus.
However, I am surprised that this salt didn’t prompt you to drink adequately. POTS is also linked to dehydration, you need both salt and water to remain properly hydrated. In fact people who drink loads of water (over-hydrate) also need many other minerals too, as they are constantly flushing these out from the body.
It’s good that you weren’t taking pain-killers or antacids which worsens any Magnesium deficiency BUT were you getting sufficient from your diet ? Magnesium helps loosen bowel movements and keep things moving, so again the fact that you were constipated suggests that maybe you weren’t getting enough from your diet. Foods rich in Magnesium are Nuts, Vegetables and Pulses (Beans, Butterbeans, Red Kidney Beans, Chick Peas, Lentils, etc). Some people think that they are ok, as they are getting plenty of vegetables and salad in their diet BUT if they don’t take in enough fat, they cannot absorb the nutrients from those foods. I can see you eat sandwiches, so that would incorporate butter yes ? so that’s good. I wouldn’t take magnesium supplements though – just sufficient salt, a magnesium rich diet, enough fat and regular baths in Epsom Salts should suffice.
Regarding your concerns, check out about Lumbar Puncture risk and alternatives at:-
Plus further info explaining the danger of Lumbar Puncture at:-
(UK)October 25, 2014 at 8:24 am #5080
Yes I was a hairdresser so it involved a lot of looking down, had done it for 10 years.
The headaches that are relived when laying down are the back of head and neck pain headaches.
I suspect that those types of headache/neck-ache are caused by a restriction of CerebroSpinal Fluid (CSF) at the junction of the head and neck. A head/neck MRI would highlight this BUT don’t necessarily accept the radiologists report if it comes back ‘normal’ in this area.
What they are looking for is something called Chiari Malformation (Chiari 1, or CM1), which is where the cerebellum (hind brain) herniates through the hole in the bottom of your skull and down the spinal opening, by at least 5mm. Many of us on here have a much less than 5mm herniation and yet show very similar symptoms. A further explanation of the Chiari terminology, if you’re interested, is at:-
Many of the medical signs are very subtle and easily missed in the normal medical setting. I also show a copy of my MRI anotated with many of the things they should be looking for at:-
(UK)October 27, 2014 at 5:33 am #5082
Thanks again for your helpful replies, do you think I would be better off paying to go private for a head/neck MRI and to see a neurologist? I feel that the NHS can often just rush you through and not be as thorough. Also do you think I should mention that I think it could be CSF? I know doctors don’t like to be told their job etc.
SarahOctober 27, 2014 at 6:54 pm #5084
It’s always best to rule out anything else.
Don’t assume that because you pay privately, you get better quality because, that hasn’t been my experience with regards to neurologists. There has been a shortfall of neurologists in the UK over the years and at one point, psychiatrists were encouraged to fill that gap. Now, don’t get me wrong, there are one or two good psychiatrists BUT there are also some weird ones! These don’t look for the obvious physical cause, they prefer to think airy-fairy, if you get my meaning and treat you like a nut-case.
You also need to know that Dr Diana’s findings/theory, is not common knowledge.
My experience has been that there are good radiologists both inside and outside the NHS but, as with anything, it depends what they have been taught and what they’ve experienced, so again it could be pot-luck. The only benefit otherwise, from going private, is that you may get seen sooner.
(UK)October 28, 2014 at 7:43 am #5087
Thank you Barbara,
I have just made an appointment with my GP, hopefully they will help me out and refer me, fingers crossed!
SarahOctober 29, 2014 at 11:37 am #5090
Hi Sarah, I have neck pain and headaches most days. The headaches can start at the base of my skull and go into my eyes, temples and down my neck, sometimes involving my shoulders. I was diagnosed with M.E as a teenager but now I am waiting to see a cardiologist because my heart rate goes up high when I stand up and maybe I have Pots instead.
Pain killers don’t help me. Lying down with something warm round my neck helps a little. It is miserable to live like this and I feel I have been abandoned for so many years with no help from GPs and also dealing with people just assuming I am lazy or crazy. I hope to get some help when I see the cardiologist in December.
I only heard about pots recently and my symptoms fit that more than M.E. I would also like to know more about the pain and if it is normal with pots. I hope you get the help you need and that they listen to you. It is difficult to deal with NHS doctors especially if you have researched for yourself it can put their backs up.
Best wishes, Anna.October 29, 2014 at 3:54 pm #5091
I am sorry to hear you are also suffering from bad headaches. I hear many people are wrongly diagnosed with things like ME or CFS instead of POTS. They said for ages I had CFS, turned out it wasn’t true. It was only through my own research that I found out what POTS was and went private to go get tested for it and for sure it was POTS.
Unfortunately the GPs can be awful, even now I am diagnosed my GP isn’t understanding. I know head and neck pain is common in POTS but I don’t think to the extent we have, but I am still new to it all so I am not totally sure. I have only been diagnosed for about 9 weeks but been unwell for about 19 months. Dr’s can get really arsey when you research stuff yourself and try to tell them their job, I was telling them for 6 months to test me for POTS, but they said there was no way it was that. Hence why I paid for a private test, so glad I did. I am now back on NHS though as don’t want to keep paying out when I shouldn’t have to.
I really hope all goes well for you when you see the cardiologist, you’re heading in the right direction now. Fingers crossed for you.
SarahOctober 30, 2014 at 4:06 am #5092
Hi Sarah, it is such a shame you were forced to go private. My GP had never heard of it but luckily he agreed to refer me to the cardiologist. I read about pots a few months ago and tested my heart rate on my son’s monitor. My son is nearly 23 months and he is severely brain damaged from birth as a result of hospital negligence.
I also got my osteopath to check me and my heart went to 150bpm when I stood up. I don’t have a proper diagnosis of pots yet but something is definitely going on. I had a virus when I was 13 and they said it was post viral fatigue to begin with. I am 39 now and must have spent many thousands of pounds on therapies, supplements and different diets and books. Nothing has ever helped me but I was assuming I had M.E.
Have you been referred to a specialist in your area? On the pots UK website there is a list of doctors all over the country.
I would love to hear how you get on. Take care. Anna. XOctober 30, 2014 at 6:31 am #5093
It is a shame but I was desperate to know what was going on and wanted to prove the doctors wrong. I saw a new GP the other day as I needed another sickness note, she put ‘POTS’ on it and said “now what does POTS stand for?” It’s one thing doctors not knowing much about it but when they haven’t even heard of it before you just think what a great start! Gosh Anna, I am so sorry to hear about your son that’s so sad.
Well your standing heart rate certainly sounds like it could be POTS. I have a app called Heart rate which is actually really quite accurate, you just place your finger over your camera lens and it monitors it for you. I didn’t think it would work at first but it matched with my blood pressure machine. That way you can see the difference between your resting HR and standing HR.
That has been going on a very long time for you, it will be a relief to finally have a proper diagnosis and to hopefully find a treatment to suit you. I asked for a referral to Dr Tushar Salukhe in London as he was on the POTS UK website, I was in the room with him for all of about 5 mins. Because I already had a diagnosis and I was already doing lots of what I was meant to be doing already, he seemed all arsey because I knew so much about it. But if it wasn’t for me and my research I would still be stuck with thinking I had CFS. He put me on medication to try and that was it, was a very long and stressful day just for a 5 minute consultation, but then that’s the NHS for you.
Sarah 🙂October 31, 2014 at 8:38 am #5095
Hi Sarah, thanks and I totally understand your frustration. I could talk for hours about the attitude of some doctors. I have never forgiven a consultant I saw many years ago who couldn’t find out what was wrong with me so decided I must have an eating disorder because I was thin and he basically told me to pull my socks up. So in his opinion it was my fault I was ill. I always eat well but at that age I didn’t put on weight and neither did food give me energy. I found out later that I am gluten intolerant and wasn’t absorbing food properly.
I am sorry to hear that the specialist wasn’t more helpful. There are some doctors on that list in Ashford, Kent and if I get the chance to get a referral I hope to go there as it’s less hassle than going to London which we have to do quite often for our son.
I would like to get a copy of Dr Diana’s book but as far as I can see it is just for download at the moment. Have you read it? It would be good to have a hard copy to lend to my doctor if the information proves relevant to me.
You should be really proud of yourself for finding out what is wrong with you and pushing for recognition and treatment. It is so unfair to have to fight the system on top of dealing with chronic illness.
Best wishes, Anna. Xxxx
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