Very Afraid– the"dizzies" has me worked up…

[Woods1977]

Hi Phil,

Thanks for your feedback!

The thing is, I had these episodes back in September, 2011, well before I ever started taking Minocycline or Zyflamend

[Woods1977]

FRIDAY, MARCH 8

[PhilC]

Hi Michelle,
@Woods1977 wrote:

The thing is, I had these episodes back in September, 2011, well before I ever started taking Minocycline or Zyflamend

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Woods1977]

Hi Phil,

I definitely had the “funny head” feeling back in September, 2011 when I was first diagnosed with RA along with headaches. However, the headaches are more severe this time around.

Your right- the fact that I had the same “episode” back in 2011 may, or may not mean anything. Furthermore your right- the Minocycline could just be making me feel “crappy” while my body is trying to get rid of the “critters” as my doctor likes to call them. Regardless, I feel like crap about 70% of the time (with exception of my joints of course). It just makes me nervous to have a funny feeling in my head almost all the time, along with headaches and not really know why I’m feeling like this. I think an MRI will set my mind at ease… The problem with me is that I have a great deal of anxiety about doctors, health etc.

I’m trying REALLY hard NOT to be “that” person who boo-hoo’s all the time. I’m not doing a very good job right now though.. 😳

[PhilC]

Hi Michelle,
@Woods1977 wrote:

… yesterday I had pains running through my teeth

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Woods1977]

***UPDATE***
MRI Results are in… for the most part everything is okay- I’m not dying of a brain tumor and I don’t have MS!

Impression:
Brain MRI with and without contrast.

Scattered subcortical hyperintensities. Differential may include migraine, postinflammatory. No other supportive findings of CNS vasculitis. No other evidence of parenchymal demyelination. No supportive findings of optic neuritis.
Visual pathways are otherwise intact. No orbital or retroorbital masses.

Right maxillary sinus mucous retention cyst.

Vestibular and auditory pathways are intact. No acoustic neuroma or cochlear hydrops. No evidence of basilar meningitis or cranial neuritis.

Partial empty sella without optic nerve sheath dilatation, globe flattening or ventricular compression.

I haven’t reviewed the results with my PC yet; I got tired of waiting for her to call me so I drove to the MRI center and got the report myself- I couldn’t stand to wait another day! However, for the most part the results seem to be fairly unremarkable…. but the question remains… What the hell is going on?? Don’t get me wrong- having the MRI out of the way definitely makes me feel better, but I’m still concerned. I guess I have a few things to think about:

1. Sync up with PC for next steps… Neurologist??
2. Visit to the Lyme doctor for testing- sooner than later!
3. Begin addressing low Pregnenolone level (MIne is only 17! My doctor said it should be around 75)….
3. Although my MRI is fairly unremarkable, I’m still concerned about Idiopathic Intracranial Hypertension as a possible cause. I am really going to push for a lumbar puncture…
4. I’m still at a loss as to whether or not the Minocin is causing my symptoms.. Again, I had a few of these episodes prior to starting AP- now I have it on a daily basis. I’m scared to stop AP because I don’t want my arthris progress to begin going backwards again… 🙁 I’m extremely torn on this item.

Finally, my dear 84 year old Aunt says “why not try an elimination of something you eat on a daily basis to see if your symptoms improve”? I think this is brillant- we all know food sensitivities can cause some UGLY symptoms!

Sorry to drive everyone nuts with my problems.. Thanks for listening! Thoughts are welcome!

[PhilC]

Hi Michelle,
@Woods1977 wrote:

3. Although my MRI is fairly unremarkable, I’m still concerned about Idiopathic Intracranial Hypertension as a possible cause. I am really going to push for a lumbar puncture…

You say that you are still concerned about the possibility you have idiopathic intracranial hypertension. Did you stop taking minocycline for even one week to see if there is any improvement in your symptoms?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Woods1977]

Hi Phil,

I’m such an idioit, I haven’t because I”m worried that my RA will get worse again… I should probably explore the possibility of a “wash out” period though for sure. Regardless, I still want to point out that I was having these “episodes” well before I started the Minocin… that’s why I’m so conflicted. **sigh**

[Woods1977]

Could TMJ be causing my dizzy spells/headaches?

I was diagnosed with TMJ by my PC and dentist back in November, 2012.

I’m probably driving everyone crazy with all my “medical theories”… but I’m now exploring the possibility of TMJ being the cause of my dizziness/headaches. I’ve been researching Migraines (which is my offical diagnosis from the doctor), and my symptoms just don’t fit. While I was doing some research I happened to stumble across an article about TMJ headaches/migraines… bingo! Although I’m not completely ruling out Idiopathic Intercranial Hypertension, I would like to explore the TMJ theory as well- apparently the following are all symptoms of TMJ:

Headaches in temples and back of head (my headaches present this way 95% of the time).

I have pain in the head, neck, and shoulders

My vision is blurry from time to time and my opthalmologist can find no evidence of vision problems. (Both MRI scan and eye exam show my eyes are 155% healthy). Apparently TMJ can cause blurry vision.

I get frequent sore throats and swallowing problems during a TMJ attack.

I have episodes of ringing in ears

Pressure/pain in ears

Frequent dizziness

I often “clench” my teeth and move my jaw from side to side.

Cannot open jaw as wide as I used to

Light sensitivy

The more research I do, the more I find my symptoms are in allignment with TMJ- I Just didn’t know how to put the puzzle together. As an additional plan of action, I plan to explore treating my TMJ to see if I can get some relief from my headache symptoms… I know TMJ doesn’t have anything to do with RA- but I’m posting this so that in the future should any fellow RA’ers have similar problems that no one can resolve, I’d like to point out that it might NOT have anything to do with the Minocin, although in my case it still remains to be seen. Regarless, I need to keep in mind the fact that I had these episodes on and off prior to starting Minocin treatment… Final piece of this puzzle, I keep thinking about something my Father used to say…During the last 10 years of his life, he complained of the exact same thing I complain of today… He would wake up feeling fine, then an hour or so upon rising, he would start to feel like crap, but couldn’t articulate what “crap” meant. I feel the exact same way. My Dad suffered from severe Bruxism and tinnitus. Although Tinnitus can have several causes, it’s quite possible my Dad’s Tinnitus was related to his Bruxism. Unless anyone responds to this post or I have a major “break through” discovery, I’m going to begin tracking my progress on my personal progress thread moving forward, as I’m quite sure everyone is tired of hearing me complain about this. Thanks everyone for your feedback and opinions… You’ve been extremely helpful.

[Trudi]

@Woods1977 wrote:

I’m probably driving everyone crazy with all my “medical theories”…

Quite the contrary–this is how we get to the bottom of our problems and if we help someone else get to the bottom of their health problems in the process–it’s a win/win situation!!
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[JoAnnC68]

Hi…
I wish you were feeling better and knew what was causing you to feel the way you do.
Since you had the problem before starting on Mino, I wouldn’t think that would be the problem…and so glad you
are doing good on the AP.
I have one or two suggestions/opinions….
Are you drinking any kind of soda? Diet Soda? Aspartame…can cause problems.
Have you being around new carpet or new flooring? the glue or some chemicals can cause dizziness.
Any kind of mold/fungus in your home or work?
Have you cut out dairy product or any of the shady vegetables to see if that helps?
Get a mouth piece to use at night, maybe this will help with clenching your teeth and your jaw.

Maybe some others will have some suggestions.
Will keep you in my thoughts and prayers!
Jo Ann

Diagnosed with RA Jan 2012
Oct 2015- RF has dropped to 19!!! Isn't that Great! ?! I'm feeling wonderful! I'm still taking Mino 2 x daily...if I don't forget!
Oct 2014 RF has dropped to 23.1!! Taking Mino 100mg 2 x daily. No Pains & doing great!!
Oct 2013-RF has dropped to 40.9!!! Feeling Wonderful!!
7-17-2013 I'm going Great!! Still taking mino 100mg twice daily. No pains or Complaints!
5-9-2013 RA Dr said I was doing good, I could stop taking prednisone since I dropped to 1/2 mg...so will

[Lynne G.SD]

Hi Woods;
I had all of your symptoms which turned out to be from Lyme.I did regular AP for 11 years before doc figured out that I have Lyme.Three years later and I am still fighting it.
Lynne

[Woods1977]

Hello to Trudi, JoAnn & Lynne G!

Thank you for your feedback!

To answer a few questions

[A Friend]

@Woods1977 wrote:

***UPDATE***
MRI Results are in… for the most part everything is okay- I’m not dying of a brain tumor and I don’t have MS!
Impression: Brain MRI with and without contrast.

Scattered subcortical hyperintensities. Differential may include migraine, postinflammatory. No other supportive findings of CNS vasculitis. No other evidence of parenchymal demyelination. No supportive findings of optic neuritis.
Visual pathways are otherwise intact. No orbital or retroorbital masses.
Right maxillary sinus mucous retention cyst.
Vestibular and auditory pathways are intact. No acoustic neuroma or cochlear hydrops. No evidence of basilar meningitis or cranial neuritis.
Partial empty sella without optic nerve sheath dilatation, globe flattening or ventricular compression.

I haven’t reviewed the results with my PC yet…. but the question remains… What the hell is going on?? Don’t get me wrong- having the MRI out of the way definitely makes me feel better, but I’m still concerned. I guess I have a few things to think about:

1. Sync up with PC for next steps… Neurologist??
2. Visit to the Lyme doctor for testing- sooner than later!
3. Begin addressing low Pregnenolone level (MIne is only 17! My doctor said it should be around 75)….
3. Although my MRI is fairly unremarkable, I’m still concerned about Idiopathic Intracranial Hypertension as a possible cause. I am really going to push for a lumbar puncture…
4. I’m still at a loss as to whether or not the Minocin is causing my symptoms.. Again, I had a few of these episodes prior to starting AP- now I have it on a daily basis. I’m scared to stop AP because I don’t want my arthris progress to begin going backwards again… 🙁 I’m extremely torn on this item… Thanks for listening! Thoughts are welcome!

Woods,
You posted this, I believe, while my PC was inoperable for about 3 weeks. So, just saw your post. My own illness onset was after I had had a diagnosis of TMJ for probably 1-1/2 to 2 years. It turned out, for myself, that I had not had TMJ at all, but probably an infection in my jaw bone on the same side as the “TMJ” pain. (My thousand dollar appliance did nothing.) I was strong and healthy at the time of onset of the jaw pain dx’d as TMJ; but after a couple of high stress things going on, plus a move back to my home state, I believe my immune system could no longer handle the “TMJ” (infection) and the other stresses, and I became ill.

I waked up one morning very dizzy, ill, etc. After taking an RX of antibiotics for about 12 days, it appeared it cleared out a huge sinus infection — only I didn’t have sinus problems or infections before that time. About the 3rd day on the abx, I started blowing my nose (3 tissues at a time…yucky)… and then I soon noticed that my “TMJ” had vanished. But after two years of this illness onset recurring about every 4 months for the next two years, the abx and my not knowing to take probiotics turned me into a lifeless vegetable… and apparently did a lot of damage. I finally had to learn how to turn around these problems… and avoid medical doctors who didn’t know about integrative medicine. I didn’t know which ones knew what I needed to know, and which ones did not. However, I had been referred to a neurologist in Austin by my ophthalmologist, and an MRI showed a place in my brain area that the radiologist said jumped off the film at him, that he didn’t have to look for it.

A new guardian angel who had put in a health store entered the scene where I had moved, and gave me a copy of her book by Dr. Wm Crook, “Chronic Fatigue and the Yeast Connection” (Dr. Crook wrote about 12 books (he was a pediatric allergist by training). Reading his book was the beginning of my road back at that time — or at least not making things worse. That “road back” finally intersected with Dr. Brown’s Road Back, but about 7 years later. Since I’d always been so healthy, I didn’t realize how much work it would take to actually recover.

So, your case may be entirely different from mine; but may have some similarities. We ARE all different in a myriad of ways, and our cases will naturally be different. But if there’s anything in this post that will be helpful, I’ll be glad.

I came here to the web site to post an important link about eyes/vision when I saw your post. So replied to you here first. But am pasting here the link and information I plan to post on a thread some place on RBF BB. Looks like it might can be of help to you right now in fighting what is in your head — It definitely is not all in your head, though!

http://www.ohsu.edu/xd/about/news_events/news/2011/07-14-ohsu-scientists-discover.cfm
OHSU SCIENTISTS DISCOVER NEW ROLE FOR VITAMIN C IN THE EYE – AND THE BRAIN
07/14/11 Portland, Ore.
In a surprising finding, vitamin C is found to prolong proper functioning of retinal cells

RBFBB is a great place, and the moderators and posters will do their best to help.

AF

[Woods1977]

First off… I wanted to thank “A Friend” for her post- I really appreciate you taking the time to write.

I told everyone I would continue to update this thread as I have information about why or what’s causing my dizziness/funny head feeling. I’m still no closer to determining the cause than I was several months ago. However, I wanted to give a run down of everything I had done thus far:

2 brain MRI’s
MRA of the brain
EEG
TONS of labs

NADA… My primary care doctor is stumped, and the Neurologist offered to put me on drugs to treat symptoms… No thanks. There’s no way in hell I’m going to just randomly take meds but I don’t know what’s wrong. I’ll have to just “deal” and hopefully it will resolve on it’s own as I continue to peel back the “layers of the onion” so to speak, and get well.

At the urging of others on this site, I have an appointment with a well known doctor in Michigan who specializes in Lyme and other wierd stuff. He was recommended to me by someone from a Lyme organization in Michigan. She said he’s quite good, and his background is in infectious disese, but apparently knows how to properly treat Lyme. Fortunately or unfortunately, this guy must be decent, because I called in July for an appointment and I can’t get in to see him until October.

If I ever figure this “Diagnosis Unknown” out, I’ll be sure to update this post! Thanks for your continued support.

Woods

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