Extreme Dizziness, tingling and numbness

[garlicprincess]

This is so confusing!

Stopped statins Zocor and Zetia on May 11th (see post under Zocor - my unfolding story)

Dizziness improved and now has gotten worse, to the point of it being so bad, the only way to stop it is to lay down and sleep. Extreme fatigue! Feels like I am "spinning inside", not objects around me spinning. Very hard to function and work and on some days very debilitating. (I know, sounds like Vertigo??)

Contacted PCP again, checked last week before I had to fly out of town for work, all vitals fine, couldn't pinpoint source of dizziness, discussed that it very well could be related to statins.

Sunday night, standing fixing dinner, very bad "dizzy day", both feet and legs started tingling and going numb, creeping up from the feet to the thighs. Called PCP Monday am and he is referring me to neurologist for consult. To further make matters more interesting, earliest consult is August 3rd! Got on cancellation list and going to check and see if there is someone else I can see much faster. Blood glucose is normal, blood pressures are normal.

Today is consult with gastro to discuss possible malabsorption issue (thank you Zetia) with potential biopsy of small and large intestine - just lovely.

So now I plan my day around how dizzy I am and whether I can work and do ADL's. My heart goes out to everyone that is experiencing side effects and issues from statins. It's absolutely horrible.

Sarah

[Darrell]

Sarah, call your Aug 3 doc's office and beg, yes beg, to be moved up if possible. Ignore the fact that you are already on the cancellation list. Fill your begging with symptoms (dizziness, creeping feelings, numbness, extreme fatigue). Then thank them for listening and hang up. There's a chance that'll get results -- and you have absolutely nothing to lose by doing it. I'll bet they'll call you back in a day or two with a better appointment date.

[carbuffmom]

Did you stop your statins cold turkey or did you wean yourself off of them?I took Zocor and then Vytorin for 13 years and stopped cold turkey and then I experienced many of the symptoms that you are having for nearly 2 months before I got feeling better. Doctors don't tell you to go off gradually. I don't think they know that. Take your CoQ10. Good luck and hang in there.

[garlicprincess]

"Did you stop your statins cold turkey or did you wean yourself off of them?I took Zocor and then Vytorin for 13 years and stopped cold turkey and then I experienced many of the symptoms that you are having for nearly 2 months before I got feeling better. Doctors don't tell you to go off gradually. I don't think they know that. Take your CoQ10. Good luck and hang in there."

Carbuffmom,
Thank you so much for sharing and your encouragement. I cannot wait to be "functional" again!Yes, the dr had me stop cold turkey and then 3 days later I found spacedoc.net and didn't want to restart only to wean off, but thankfully was able to learn about the importance of CoQ10, Fish Oil and the other supplements to help shake my body back into Warp Speed 10. It helps to know that you are feeling better!!!!!!!

Working on typing notes for family dr visit at 1:30 and gastro at 3:30. I am a POA for two family members and for some reason it's easier to hammer the practioners for other people, I seem to get emotional about how badly I feel and don't seem to get all my points across as I need to.

Best,
Sarah

[garlicprincess]

"Sarah, call your Aug 3 doc's office and beg, yes beg, to be moved up if possible. Ignore the fact that you are already on the cancellation list. Fill your begging with symptoms (dizziness, creeping feelings, numbness, extreme fatigue). Then thank them for listening and hang up. There's a chance that'll get results -- and you have absolutely nothing to lose by doing it. I'll bet they'll call you back in a day or two with a better appointment date."

Darrell,

Thank you so much for your post and suggestion to call. This morning I actually thought of driving to their office and camping out in the waiting room - but phone calls will be very effective and I cannot even tell you why I didn't think of that. I seem to not be the greatest right now as far as thinking clearly, probably because I am focusing on trying not to be dizzy and trying not to fall. Thank you, thank you! I have completed my first call and at least got a sympathetic ear.

Best,
Sarah

[garlicprincess]

Oh my! Appt with PCP today to follow up on dizziness and tingling/numbness and extreme fatigue. He is working to get appt with another neurologist - should know in a couple of days and it should be within the next two weeks. In the meantime I am still working on the Aug 3rd appt as a back-up.

He thinks the odds are low for MS, ALS, brain tumor, and thinks my symptoms are from depression!!!!!!!! So I mentioned that I thought the symptoms are related to 10 years of statin use, and he feels the statin drugs should have cleared out of my system in one week and since I am not taking them, there are no side effects....

Gastro appt went fine, he agrees my issues were from Zetia and most likely did create a malabsorption problem that has ceased since I stopped the Zetia. Colonoscopy upcoming and should be no big deal.

Hopefully I will get to the bottom of this and not stopping the CoQ10, Fish Oil, B6, B12, Vit C and baby aspirin.

Thanks to all for listening to me vent and for your sharing, support and encouragement. I am most grateful to have a place to come, read, learn, listen and hopefully maybe my sharing may help someone else down the road. It is comforting to know that I am not the only one going through something like this.

Best,
Sarah

[garlicprincess]

Wish me luck or something like that!

Seeing 2 neuro's this afternoon for consult; they called yesterday and could get me in today...........will be interesting to see what they come up with since the PCP could not find "anything organically wrong with me to cause the dizziness, tingling and the numbness" that I experienced two times last week.

I still continue to fight the dizziness and wiped out, total fatigue feeling with heart palpitations going on. Somedays are better than others, but something is still not right.

Sarah

[Darrell]

"...he feels the statin drugs should have cleared out of my system in one week and since I am not taking them, there are no side effects..."
AArrrrrghh! [Rips hair out.]
If you drank wood alcohol it might clear out in a week, but you may be blind from it forever. If you got a bad sunburn it might clear up in a few weeks, but you may have genetic damage and get melanoma from it years later. If you got a tick bite it might clear up in a week, but you may have Lyme Disease. If you ate a poisonous mushroom it might clear out in a week, but you may be brain-damaged for life. If you ate an extra doughnut every day, became obese, and stopped eating extra donuts, you would still be obese a week later.

[sos_group_owner]

Hi Darrell,

It's all so logical (especially to US non-medical guys & gals), but statin adverse effects continues to elude most doctors.
How many have to complain to their Dr before the light finally comes on

Fran

[bunnylady]

When I went to CVS pharmacy to fill my methylprednisolone 21 pack the pharmacist said it was used frequently for statin related side effects- he's heard me bitch about it and never mentioned it- duh! Try it- It was a huge turning point for me- very sick last Thur with headaches and diarrhea- each month something new comes along- today I'm fine- swimming, going up and down steps, cooking- I'm ME again

[gardeneyes]

I have a friend who has experienced vertigo for almost a year now. The only relief she has received is from an acupuncturist. I am not promoting them but just sharing what has worked for her. She spent 9 months trying to find an answer from the doctors and never could determine what caused it. As far as the gastro issues, my husband has been dealing with that since going off statins and was only given minimal help from the drs. The naturopath we are seeing has been able to help with that to some degree. The doctors also told my husband many of his problems could be mental so they sent him to a psychiatrist. He went 2 times and the psychatrist told him that there was no reason to believe his symptoms were related to stress depression. Don't give in to the rhetoric that the doctors try to push. Keep pushing but explore alternatives as well, that is where we have found the best relief for my husband.