Is this postural hypotension? On getting up or when lying down my brain starts to seriously spin inside my head. I have to hold on when standing up if I had been lying down. But weirdly it happens in reverse. When lying down my head spins then too. Has anyone else had this? Have you had success with overcoming it? Am trying to increase my fluid intake as dehydration might be a factor....?
Head spinning quite dramatically: Is this... - Thyroid UK
Head spinning quite dramatically
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unlocky
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Hi unlucky, sorry you are feeling so unwell.
Don't know if it has anything to do with hypotension ( low blood pressure I think) but it could be benign paroxysmal positional vertigo BPPV it sounds terrible but is a result of the fluid in your inner ear thickening slightly and crystals in your inner ear canals getting 'stuck' in the wrong position. It can be aggravated when you are dehydrated and I have had it a few times when I've been on long haul flights.
I first had a really bad case bout 15 years ago and my head would spin really badly if I turned over in bed or if I lifted the boot of the car, so I guess the repositioning of the head triggered it, it was extremely unpleasant, I have know some people to vomit when their head spun.
I had travel sickness tablets until I could see an ENT specialist, to rule out any sinister causes.
I was asked if I suffered from Thyroid problems by a very perceptive nurse, but as many on here know individual symptoms that could be attributed to an underactive thyroid are rarely looked at together by GP's.
Anyway I was referred on to a physio who performed an Epley manouvre, I had to sleep semi upright for three nights following this so that the crystals in my inner ear would not go back to the incorrect position, I was also shown how to do brandt darroff exercises should I ever have a repeat of the symptoms, as in when I have been on a long flight.
If I were you I'd get it checked out by a GP just to be safe, but you could google the BPPV and the exercises.
If you have a go at the brandt darroff exercises be aware that you usually repeat them 5 times 2-3 times a day, and when you do the first cycle your head will spin like crazy, as you approach the 5th cycle the spinning usually subsides.
I'm not medically qualified but I've just told you about my own experience.
Wow! What an amazing answer. Thank you soooo much. I feel I can devise a strategy now with this insight from your kind descriptions. It feels like there is an explanation that makes sense. I think I maybe dehydrated. I've also been staying somewhere rather dusty (possibly with damp or even slight mould - so that's another possiblility). Seeing a physio would be a treat so I may look into that if the self-referral system is still operational here in UK. I will look up your suggestions. Many thanks again very much indeed.
You can see people doing the Epley Manoeuvre that knitwitty mentions in Youtube videos. I think SeasideSusie did the manoeuvre for herself at some point, but I can't remember the circumstances.
Epley maneuver
The Epley maneuver or repositioning maneuver is a maneuver used by medical professionals to treat one common cause of vertigo, benign paroxysmal positional vertigo of the posterior or anterior canals of the ear. It works by allowing free-floating particles from the affected semicircular canal to be relocated, using gravity, back into the utricle, where they can no longer stimulate the cupula, therefore relieving the patient of bothersome vertigo. This maneuver was developed by Dr. John Epley and first described in 1980.
unlocky
humanbean is correct. I had gone to the GP with dizziness when getting up in bed. I'd try to lift my head to get out of bed and once I'd got to the sitting position I'd get dizzy and fall back onto the pillow. GP mentioned the crystals in the ear and the Epley Manoeuvre but didn't offer to do it. I found it on Youtube, did it myself at home lying on my bed and I think it was on the third day when I did it I felt as though the room was spinning wildly, it lasted a few seconds and then passed. After that it's been fine.
Thanks so much Susie... so this worked for you? Great news. You only did it once to achieve an adjustment which then lasted permanently?
You only did it once to achieve an adjustment which then lasted permanently?
No, I did it three days running, and on the third day it must have dislodged the crystals and I haven't had a problem since. This was about 2 years ago.
Have you had your B12 tested? I had this and my endo tried to tell me it was postural hypotension, but it actually turned out to be low B12.
Is there a specific test for B12 Greygoose? Good idea. I will try that. Makes sense. I'm relunctant with the B vitamins (they taste so awful!!). I have been going for the smoothies which have them added just as a way of getting something but was concerned about excess fruit sugar.
Not really a good way of getting B vits. Besides, you really should get them tested before taking anything. You need a base-line to make sure you don't have Pernicious Anemia. Just ask your doctor to test your B12 and folate. 
Sounds more like vertigo if it's happening on lying and standing, could be labyrinthitis, I took Stugeron travel pills for it.
Hi Bantum
Many thanks indeed for your suggestion .. I looked up the active ingredient and got this which sounds positive.
Cinnarizine
Cinnarizine is an antihistamine and calcium channel blocker of the diphenylmethylpiperazine group. It is also known to promote cerebral blood flow, and so is used to treat cerebral apoplexy, post-trauma cerebral symptoms, and cerebral arteriosclerosis. However, it is more commonly prescribed for nausea and vomiting due to motion sickness or other sources such as chemotherapy, vertigo, or Ménière's disease.
If you have labrynthitis it can take weeks to get better but the tablets worked well for me.
It's best not to self diagnose so best to see the doc.
SlowDragonAdministrator
Presumably you are hypothyroid?
How much Levothyroxine are you currently taking?
Do you have Hashimoto's?
Have you had vitamin D, folate, ferritin and B12 tested?
What vitamin supplements do you currently take?
Low B vitamins can cause head spinning
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Thank you so much for all of this. I will reply further as just off to bed but didn't want to go without acknowledging everything you've suggested and all your questions. Thank you again very much indeed. I really feel cared for! Thank you what a lovely group xxxxxxxxxxxxx
Hi Slow Dragon
Yes my tendency is towards a low thyroid although going gluten-free in the main addressed it and I didn't need to continue with the prescribed levothyrixin. I went from 5.00 to 3.5 TSH.
Vitamin D, folate, ferritin and B12 were within the Functional range when tested.
Both my TPO and TG Abs were raised. Not greatly but I'm not getting consent for a re-test which is frustrating. But I note the Labs which you suggest and will probably retest in the future.
FT4 and FT3 were within range. I was lucky in that the Consultant obliged me as a one-off by ordering those tests on the NHS.
I'd like to look at my Reverse T3 although I don't think its a problem. Its the one test I haven't had yet! What do you think of it as an indicator?
A TSH of 3.5 is still higher than average
healthunlocked.com/thyroidu...
Yes it is. I'd love to experience below 1.
Has anyone in this group got there out of interest?
Isn't .5 optimum for conception?
Maybe I'll announce that I'm pregnant ….(at 65) haha!!
I have been adding in Vit B once again. A challenging Vit to take!! I really think it is helping so many thanks indeed. Although I noticed that the incidence seem to relate to when I'm staying at a friend's place and think it might be associated with damp. I wonder if you have any thoughts on that?
Perhaps due to being more active/less rested when not at home
When hypo, we need to rest and relax
That said.. I'm getting some benefit from having a more active regime. I'm an unhealthy slug at home and I miss out on the sunlight. May I ask as to your TSH SlowDragon?
Like many on combination of Levothyroxine plus T3, my TSH is very low, FT4 and FT3 in top third of range.
I have no thyroid function left after almost 30 years since diagnosed with Hashimoto's (actually Ord's Thyroiditis)
The following article is from The Great Soviet Encyclopedia (1979). It might be outdated or ideologically biased.
Thyroiditis
inflammation of the thyroid gland caused by nonspecific infection (for example, staphylococcosis), specific infection (tuberculosis), poisoning (by lead or carbon monoxide), or autoimmune diseases. Symptoms include pain upon swallowing or moving the head backward, throbbing pain in the ears and lower jaw, elevated body temperature, enlargement of the neck, and tenderness of the regional lymph nodes. The course of thyroiditis may be acute, subacute, or chronic. Treatment calls for the use of antiinflammatory agents, analgesics, antibiotics, corticosteroids, thyroidin, and vitamins. Suppurative thyroiditis is treated surgically.
The Great Soviet Encyclopedia, 3rd Edition (1970-1979). © 2010 The Gale Group, Inc. All rights reserved.
Sorry to hear. Is it an argument for taking thyroxin. Would you say its the case for you that you might have salvaged more of your thyroid if you had started thyroxin sooner? I'm undecided on this one. Probably phlegmatism keeps me doing the minimum but the lifestyle factors have helped so much.
I just read your bio. Many thanks for the write up. You have done so well!!
Underlying infection (per article above) seems to be a thing. Izabella Wentz emphasises it too as one of the many root causes. I was definitely overloaded with anti-biotics as a child for chest infections.
I strongly suspect I was always gluten intolerant (no clear symptoms) was born full term but very under weight at birth and psoriasis. Tonsillectomy at very young age, perhaps upset Thyroid
Thanks JaneyJaney. I do have low blood pressure... always have and my father did too. It was seen as healthy!! Concerned about POTS are you doing ok with it? Any improvement??
Low blood pressure can be hypothyroid symptom
I’ve had a couple of bouts of this since summer. I’m pretty sure it is my inner ear - my blood pressure wasn’t/isn’t too low and the fact my head was spinning when I was lying down and no different at all when I stood up - plus I never get a ‘head rush’ when I get up off the floor at Pilates - made me sure it’s my inner ear.
I started taking anti sea sickness pills and also antihistamines and that helped then I got worried as I was due to go on holiday and worried in case the ferry crossing would make things worse so I saw a totally disinterested locum doctor - talk about money for old rope!
Anyway, I suspect to get rid of me she prescribed something that looked so powerful that I decided to stick with the travel pills. Eventually things settled down. I felt dizzy again recently and went back on the travel pills - they seem to keep it at bay.
Many thanks. So glad you have a strategy that works for you. Well done!
Hopefully you find something too. It’s not a pleasant feeling at all. Terrible that you have to find a ‘do it yourself’ cure.
Thanks again! Yes it seems to come and go. Actually I think it might be related to exposure to damp which I'm addressing . Was that the case for you or something else? I have found the Vit B to assist as well. Have you tried adding that in too?
I haven’t a clue what caused mine. I just realised I felt dizzy when I was woke up one morning, i felt as if the room was moving. I take B12 if my B12 is low but I haven’t taken a B complex tablet.
Increasing your fluids might help.
Try taking a bottle of water to bed. I don’t take a glass any more, I just used to spill it.
Take a look at autonomic nervous system! That’s what it is for me having suffered from trauma in my early life
Ok. Thank you very much for making this suggestion. I'd love to hear more about your experience and how you are now. Is this with respect to ACE's perhaps that you're referring to? ie: Adverse Childhood Events perhaps??. Very challenging!! Eeeek xx
yes it is, if you've experienced ANY TRAUMA during your lifetime, I would urge you to look into this. I experienced childhood trauma and I am now 69 years old. It is only now that I am discovering I have an overactive sympathetic nervous system. Most of my knowledge comes from google research but I know that I am constantly in fight/freeze mode and this can affect your dizziness/fainting episodes. Hope this helps Take a look at Complex PTSD on google.
Thanks.
I can't really think of any PTSD and think I've led a charmed life. But there's bound to be something!! Anyway it worked for you. How long did it take to investigate and would you say that you've achieved a 'fix' as it were?
Well I now know that I have very high cortisol levels in my blood. I asked GP to test blood levels but I also took a private saliva test. They tested me for cushings syndrome/disease but tell me I don't have this. I take rhodiola for excess cortisol levels which has helped me and I really try to stay as calm as possible. I also do vagus nerve exercises like washing my face in cold water, breathing exercises etc. These seem to be helping as I do not suffer as much as I used to from getting up quickly. I really try to move very slowly from a lying/sitting position which helps me even more. You could look up the vagus nerve and there is a group on facebook for repairing this very important nerve which starts at the brain and travels as far down as the pelvis. I wish you all the best in your research.
Many thanks indeed. And much luck to you as well!
Do u take BP meds or any diuretics? If already asked sorry
No. I don't take any meds. Nor would I !!!
Have u been under a lot of stress??? Have u experienced this b4?
Hi Bethany
I don't think so. Though we hear others mention it. This is something very distinct. I think its about damp … the B vits are helping as they promote detox so I'm grateful for that suggestion and it makes sense! Not particularly under stress. Actually enjoying life!!
I hope u figure it out soon I have dizziness too! but more like head pushing forward not spinning
Thanks. Really appreciate your kind interest. Thank you. I hope you figure out what's going on for you. A pressure headache??
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