HealingWell
Search Close Search
☰

Dizzy while standing in queues or standing and talking

Support Forums
>
Chronic Fatigue Syndrome
✚ New Topic ✚ Reply
1 23 4
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/14/2014 9:49 AM (GMT 0)
So I am stood queuing in a local supermarket today and I am swaying and just can’t stand still comfortably without this annoying sensation of this unbalance. So much so I put my items down and walked out of the store.

So since my last update, have things improved...nahh.. not really !!

What’s new? .. I’ve about 5 treatments with a Chiropractor over 5 weeks, who believed she could help me with these unbalanced sensations but does hide behind the whole “It will take time” chestnut to prise £40.00 a pop out of my wallet each time I visit. Don’t get me wrong, she has loosened my neck up because that was positively tight. As glad as I am, I wasn’t seeing her for a tight neck, I was seeing her to sort this vertigo that she was so confident that she would fix.

I have also had so far two acupuncturists treatments and I’ll do another 3 of those. Will it fix it?....I don’t know !! I’m not sure if it will, I don’t think I’ve felt any benefit so far vertigowise but I have felt less anxious, especially this week so I’ll run with it. I love the theory behind acupuncture, it makes sense and I get it. I’ll update you in a couple of weeks.

All I want to achieve is not to feel vile and unbalanced when stood in queues and especially in Supermarkets or when I am simply stood still talking to someone. I am willing to try anything and then I can look back and say I’ve tried this that and the other to achieve my goal.

I’ve been wearing my glasses properly, readers for PC and reading and distance glasses for distance which is a bit of a pain in the bum so I may have to get varifocals but my headaches seem to be less and not so foggy. I’ve also booked an appointment with a new optician that has a colorometer, useful for people with a visual dysfunction. Allegedly they can prescribe you with the exact colour tint of lense which should stop you feeling vile in supermarkets.

I also did an hour on the treadmill last night which made me feel vile, unbalanced and nauseated (Especially when I stopped) but I’ll stick with it in the hope to retrain my brain to balance me and perhaps losing a couple of stone may help will be a nice side effect.

So that’s my story so far, how is everyone else getting on?
Posted 4/27/2014 8:35 PM (GMT 0)
Darren, I'm sorry you're feeling this way but glad I found this forum/thread. I have the exact same symptoms and it's really done a number on my life. I know I have about 5 minutes while up before the dizziness kicks on. I'm fine laying down. I get pretty nervous going out now because for instance even going for a long walk gets me so dizzy and foggy. This has been going on for a year now. I went to the er when it first happened and EKG, catscan, blood were all fine. Got an MRI and it was normal, went to the chiropractor who find minor things on my neck X-ray but nothing to cause dizziness. Went to ent and my ears were fine. I'm willing to try anything. I went to a psychiatrist was not prescribed medication and it's the same. I highly doubt it's anxiety because I can be in the comfort of my own home and it kicks in without fail if standing. I'm scheduling another visit to the neurologist. Please stay updated on everything. We can do this together. Please let me know if you find anything and I'll do the same. It's very frustrating.
Posted 4/30/2014 2:51 PM (GMT 0)
I am wondering if this could be linked to my eyes. I don't wear glasses and I can see pretty well but I have developed some floaters in my eye site and when I am out it seems like my eyes can't really keep up with bright lights or if I am driving fast moving objects. I drive a lot for my work so I take a lot of breaks during my trips to try to make the dizziness that comes and goes go away. Again, my dizziness is worse after standing or walking but it does creep in sitting sometimes although not as bad, and laying down I am fine. I am willing to try anything at this point so I guess I'll get my eyes checked. Something seems to be going on in my head though and I still think it's some sort of nerve thing. I'd give anything to figure this out. I really miss those days of living normal. Darren, when you are standing do your legs sometimes feel weak like the may just give out. Mine do sometimes, although I have never actually fallen down or fainted even though sometimes it feels like I might. Sometimes if I stand, I'll get dizzy, then after awhile it somewhat passes a bit but then always comes back. This whole thing just really sucks. It's getting harder and harder to stay positive when no one has any answers.
Posted 5/8/2014 3:30 AM (GMT 0)
I went to a ton of Doctors after experiencing identical symptoms and had the same result as all of you. The most difficult part is describing what you're feeling when standing, in supermarket, mall etc. One day, after getting my eyes examined by my Ophthalmologist, I mentioned that I had these mysterious symptoms for years, everyday. He told me I'm experiencing Occipital Ophthalmic Migraines. They cause all of our symptoms without a headache. He jokingly called it a "wallet biopsy" because sufferers go from Doc to Doc looking for answers.

He told me to try to identify the triggers: sunlight, chocolate, sulfites in dried fruit etc. I eliminated those things and started yoga. I remember the moment it went away- I was doing a headstand and other stretches with my instructor and when we were done I was moving around and realized I was okay! Whenever I felt the symptoms coming back I would lie on my back on my bed and hang my head off of the bed to duplicate the headstand.

I was symptom free from 2006 to March 2014. Unfortunately, it's back and I don't know why. Time for yoga class...
Posted 5/10/2014 12:58 AM (GMT 0)
nice thread Darren....just found this site through a google search...I have been like that for over 20yrs... It used to kick in after hours, then after a few minutes. Now, I get it after 2 minutes. I also get it if I am doing physical work like changing a tire or doing any repetious task like strumming a guitar. The hardest thing is to explain it to a doctor. I have been through all, neuro, ent, mri, bp, all normal. My doc thinks that it is vertigo. I am going to see an ENT again because I really cannot take it anymore.

Any update DarrenC?
Alan R, what made it go away from 2006 to 2014?

I thought I was the only one with this thing...

Post Edited (odonel) : 5/9/2014 7:01:04 PM (GMT-6)

Posted 5/10/2014 2:56 AM (GMT 0)
I'm not sure, but here is what I gave up: raisins and dried fruit, foods (like gum) with aspartame, & chocolate. Then I started yoga, specifically moves that would stretch my head and neck backwards or do headstands (with help) against a wall. I know how crazy that sounds, but the occipital artery is in the neck under the ear and anything that stretches it might help. It was so incredible to finally feel good again and in the past few nights I've been back to doing headstands and I feel like the symptoms are improving. I'll report back in a week.

I'm amazed at how many people have this since I've never met anyone who did. But again, my Ophthalmologist knew exactly what it was.
Posted 5/14/2014 1:07 PM (GMT 0)
Alan, that is awesome you are having such great improvement. Last week I had a pretty good week overall. I also began yoga as I like to stay in shape and I can barely get out much with this dizzy thing. I have improved my diet. I am hardly overweight though. My dizziness was horrible yesterday. I have noticed that it is worse in the hear and bright lights. I have a follow up appointment with a neuro this Friday and I plan on getting my eyes check next. I also may go back to the chiropractor as he was the only one to find something that might be causing it. This whole thing flat out sucks as I am a very active, outdoorsy person, and love music but I can't go to concerts anymore because of the standing. It used to not kick in until around 30 minutes but now the dizziness comes around 2 minutes of standing, then I lay down for awhile, it goes away, then I stand again and it's just a repeating cycle. I would love to just pin point the thing. It does help that I have found this forum with people, with similar symptoms. For that, thanks guys.
Posted 5/14/2014 2:00 PM (GMT 0)
Chrisco, thanx for the update. Can you explain what you mean by having a good week last week? DId the problem go away that week and came back again this week? Were there any improvements? besides the minor neck x-ray findings, what else did the chiropractor find that may be contributing to the problem?

ours may be similar Chrisco. It used to kick in after a few minutes, noe it does around 2 minutes. It gets worse if i am making a copy while standing or using any touch-screen.

Do you guys have problem sleeping? I have always thought that it was due to lack of sleep because sleeping is the only chronic problem that I have had for more than half of my life...
Posted 5/14/2014 10:46 PM (GMT 0)
I do Odonel, big time. I've had weird, mysterious calf pain at night that wakes me up every night at about 1 or two in the morning and then I have to do an assortment of things (massage machine, ben gay, stretching or when I'm desperate, a pain med) to try and get back to sleep. I probably average 4 hours of sleep for the past 20 years. Interesting question you asked...If we all aren't sleeping then there's a correlation here. This dizziness thing is just one of the weird things that have plagued me. And I'm not overweight either, still play basketball once a week (though it can be a challenge when the head is "woozy" ) and tennis when the weather is nice. I eat well and am on a special diet from a Naturopath right now to try every possible thing to figure these "migraines" out.

I'll be taking an allergy panel in the next month which will test my blood for allergies to everything. I'm already allergic to gluten and they say when you have an allergy to one thing there's more. Like all of you, I wonder sometimes what the hell I did to bring this indescribable, annoying illness on. But we're going to figure it out and I can't wait till we have an answer and a remedy for everybody who suffers from this crap.

And Chrisco, the Doc told me sunlight can cause these to kick in so sunglasses are a must!
Posted 5/15/2014 12:01 AM (GMT 0)
I just came from the ENT. He thinks it is benign vertigo as my doc did. I am going to see a therapist tomorrow and let you guys know. Though I am a bit skeptical, I am willing to try anything to get rid of that thing...
Posted 5/19/2014 6:49 PM (GMT 0)
Good luck Odonel. I hope all went well at the Therapist's. What I meant that I had a good week was that while I still had my dizziness while standing and walking, it wasn't as bad as it has been and I guess I just felt better as sometimes I get really depressed and anxious about all of this.

I went to the Neurologist for a follow up last Friday. He took my blood pressure sitting down and then I stood for awhile until I got dizzy (maybe 5 minutes of standing). I got dizzy and while my BP wasn't abnormally low it was significantly lower than when I was sitting while my Heart Rate while not significantly high was much higher than when I was sitting. (Sitting HR was 50 (low as I am in pretty good shape) and standing after 5 minutes was 99). He is sending me to a Cardiologist as he strongly believes I have Chronic Orthostatic Intolerence. I am willing to give it a shot and take a tilt test. Ironically, COI and CFS are almost one in the same. We shall see.
Posted 5/19/2014 10:36 PM (GMT 0)
I doubt that it is vertigo too. It's funny that your neuro sent you to a cardio. I was reading about Neurally Mediated Hypotension (NMH) and thought it was exactly what I was facing. I did the test table about 5yrs ago and it was normal. I think the tech may have missed it. My doc thinks that I should do it again. Not sure if I can post a link here, but you can read all about it at holistic. I do not want to put the link, but do a google search for "High Pulse Low Blood Pressure, Neurally Mediated Hypotension". I also watched some lengthy videos about the topic in youtube. you can also search for nmh and pots
Posted 5/21/2014 1:35 PM (GMT 0)
I just want the cause of all of this pin pointed to take away the stress of that and just focus on trying to get better. It's hard to look back and remember what it was like feeling normal all of the time; being able to walk around talking with people, and feel fine.
Posted 5/21/2014 1:46 PM (GMT 0)
Well, I am not as stress as I was before because I know that there may be help. Even withouht a tilt test, I know for a fact that it is definitely POTS for me or some other variety of it. (Tachycardia,Headaches,Dizziness,Shortness of breath,Blurry vision,Tingling in the legs,sweating,feelings of heat,Nausea,fainting feeling) are symptons of POTS. The vestibular therapy is no help. I doubted that it was vertigo anyway.
Posted 5/23/2014 6:53 PM (GMT 0)
Odonel did the ENT rule out ear problems?

POTS/COI seem to be the most linked to this condition right now. I have a cardiologist appointment on June 9. I am afraid right now to do much exercise because now I am freaked out I have a bad heart condition. For this whole week my heart has had an ache and my left arm has been tingly, so of course I keep thinking heart attack but maybe it's just anxiety from all of this. I know the culprit is not anxiety but I have been getting anxiety from the POTS or whatever is causing the standing dizziness.

This past week I have eaten junk and feel like crap. The past 2 weeks (better weeks for me) I ate great healthy food and felt better so I know I need to get on track with that. While I am not too terribly out of shape, I know that I could stand to be in better shape, and I think it will help with everything or at the very least the anxiety that comes along with this.

Y'all be well.
Posted 5/23/2014 7:51 PM (GMT 0)
The ENT said it was BPPV and sent me to vestibular therapy which was a waste of time and money... Last I heard, as unbearable as it may be, this thing is not life threating. It is just annoying. I feel you Chrisco. June 9 feels like years away...

Check the following Chrisco for some info.
http://www.potsrecovery.com/
http://www.webmd.com/heart-disease/news/20110620/exercise-may-help-treat-pots-heart-condition http://shawnethomas.com/2013/06/13/a-new-regimen-pots-update-june-2013/

Post Edited (odonel) : 5/23/2014 1:59:47 PM (GMT-6)

Posted 5/28/2014 5:04 PM (GMT 0)
I gotcha. So the ENT was wrong? I had a negative time at my ENT too. They didn't really seem like they knew what they were doing and they passed it off that it was BPPV that they stated a I cured on my own (I am not cured of the dizziness but they said this anyways) and chronic migraine. Big waste of time and money for me too.

It's a huge blessing if this is not life threatening as I have a four month old daughter who I more than anything want to see her grow and blossom. In my stubborn head, I am not sold that this is POTS. I sort of hope it is though just to pinpoint this thing. I still feel like this may be a neck/cervical thing as when I sleep in weird positions by dizziness is worse. I have my appointment with the Heart Doctor June 9 who will hopefully be able to diagnose me which like you say feels years away.

Thank you so much for all of the information! I am going to keep exercising and eating clean as one of the articles said it could help treat the condition. Thanks so much odonel!

Do you plan on going back for a diagnosis or do you believe you self diagnosed it? These doctors don't seem to be doing much but taking my money.
Posted 5/30/2014 5:21 PM (GMT 0)
I feel you Chrisco...

How is your diet Chrisco? Do you drink water?

I eliminated a lot from my diet, I try to drink at least 64oz of water a day, no more soda, I started taking Vitamin B complex, I take magnesium daily...   I feel much better. I am going to see my doctor 2nd week of June. Depends on how it is, I may ask to see a cardiologist.

Tomorrow, I am goign to pick-up some more supplements at walmart such as: vitamin d3, ginseng, vitamin e,hawthorn and some more...

I think the water and the B complex have helped a little.

Posted 6/2/2014 3:25 PM (GMT 0)
odonel, my diet is ok. It fluctuates. I could do better. I do drink a ton of water. I always have. I need to stick to eating more raw veggies. Let me know if any of the supplements you take are continuing to help you. It may be something I'll try too. I'll try anything.
Posted 6/6/2014 2:58 AM (GMT 0)
Okay, so it's been about a month since I visited the Naturopath and she changed my diet and gave me supplements. I wanted to wait to report in until I was reasonably certain that my symptoms had disappeared again. So here is what I found out;

She had me give up gluten (no problem since I'm already allergic), dairy, peanuts, soy, shellfish, chocolate, cane sugar, artificial sweeteners, dried fruits, citrus, tomato sauce, corn etc and then take this nutritional shake, vitamin D, fish oil and two supplements. This was for 3 weeks and then I was to gradually stop the supplements and reintroduce certain foods. Since I couldn't eat anything and was pretty angry about it, I began to snack on cashews, walnuts, pistachios. In the first week, the night after eating half a jar of nuts and then having a bowl of rice chex with almond milk for breakfast (eeeww!) an hour later the room began to SPIN. To make a very long story short, I was either having a reaction to the nuts, or a blood sugar issue due to a lack of protein according to the Naturopath. So...since then I made sure to have some type of protein for breakfast (egg whites or eggs with chix sausage, smoked salmon etc) and eliminate all nuts. To see which it was (since nuts have protein) I started to have an apple in the morning only-no protein- and I'm fine. Zero symptoms and I feel GREAT! My energy level is up and I'm not woozy, dizzy!

Could I have been allergic to nuts this whole time? I eat well and nuts have been part of it for awhile. And I had been binging on natural peanut butter in the last 6 months when my symptoms returned after years of being dizzy-free, but I never would have connected the two. Plus, I've never heard of a nut allergy presenting this way. But I'm learning that when you put something in your body that it doesn't like, it will make you miserable.

I'm continuing with the nutritional shake, vitamin d and fish oil. And no nuts. I'm back to eating dairy, and most of the other stuff I had temporarily given up. The world is a wonderful place when you can walk and stand and not feel like you're going to fall. My hope is that you're able to discover the culprit like I think I did. I'll report in from time to time and let you know if anything returns.
Posted 6/6/2014 11:33 AM (GMT 0)
nice to hear alan r...

I gave all these up too, I also take vitamin D and fish oil, but not on a regular basis. What are the other 2 supplements and which shake ? Are they secret ?? I have gluten free chex with coconut or some lactaid free milk in the morning.
Posted 6/7/2014 1:00 AM (GMT 0)
The supplements I took for 7 days and they were not part of the remedy since I was still feeling dizzy when I stopped them. The nutritional drink is a big jug of powder by Thorne Research called Mediclear-SGS and it wasn't that bad since it was a chocolate flavor. Mixed it with some water and ice and threw it in the blender each night. Today was another dizzy free day!
Posted 6/7/2014 1:21 AM (GMT 0)
Great to hear you are better... I looked for a naturopath around me, but my insurance does cover them...

Thanks for the update. Was the nutriment the only thing you had for food during these 3 weeks?
Posted 6/7/2014 3:46 AM (GMT 0)
No, I ate whatever I was allowed to:chicken, fish, some meat, eggs, salad, turkey !, hummus. But I was struggling. I couldn't chew gum or have a mint because they have artificial sweeteners. I forgot to mention that I was supposed to avoid soy as well. Everything has soy, especially the Asian food I love. But I ate my steamed chicken and broccoli with Thai fish sauce instead of soy sauce, though I did cheat with gluten free soy sauce occasionally.

Aetna does not cover the Naturopath so there went $450. But, the amount I spent on doctors, co pays, medicines, MRI's , MRA's over the years was ridiculous so now that I feel better it's been money well spent.

Maybe try the regimen that I did? Go three weeks avoiding all of the things I had to avoid. Get that nutritional powder I mentioned. Yes it will SUCK. Then after 3 weeks reintroduce dairy and gradually other foods. See how you feel. I haven't had nuts in a few weeks and I haven't been dizzy in a few weeks. Coincidence? Hope not. Something you're eating is probably making you sick. And it's something you would probably never think of.

I hope you find the problem. When you do, that will be great!
Posted 7/30/2014 6:12 AM (GMT 0)
Sounds like you need to have a Tilt Table Test done by a Cardiologist
✚ New Topic ✚ Reply
1234