Dizziness and Dr. ping pong

[BKreader]

What's going on? Anyone have similar experiences. Frustrated again.

I have been experiencing dizzy spells since March 1st. This came on while shopping with my kids. I suddenly felt what I call wonky. It feels like of a cross between that feeling you get after being on a boat all day and dizziness. Almost drunk like in the head. For a moment, I wasn't sure if I was going to pass out or get sick. I thought maybe I hadn't eaten much so I grabbed some nuts and headed home shortly. It persisted but more mild. I have had some degree of dizziness everyday since. It seems worse between the hours of 10-1. In addition to the ongoing dizziness, I have had several more severe spells like my initial experience. Where I feel way wonky and a bit out of sorts. Fortunately, I have had people with me during a few of them and others comment that I turn very pale or white. My husband witnessed I was fine one moment and watched the color drain from my face while we shopping. He said, "You turned white. Not just pale but white." My Rhuemy said to see the new Neuro and also discuss the recent evolvement of my pin pricks and shooting pains.

Around the same time this came on I started getting pulsitile tinnitus. First, periodically whenever there was any back pressure (i.e. coughing, sneezing, etc) then consistently. The pulsing swishy sound was sup annoying so I went to the ENT. I figured that had something to with the dizziness. My ears checked out fine, but I was told sometimes a vein can drop down causing the pulsing sound and there is nothing that can be done. Good thing the swooshy sound resolved about over a week ago.

I must not forget to mention that I have start seeing small flashes in my vision. Like a super fast bright floater or a quick line flashing across. Opthamologist said eyes look fine. No explanation.

The neurologist said my neuro exam was perfectly normal, but after checking my blood pressure laying down, upon standing  and 2 minutes later he said I had Orthostatic Hypotension and I needed my PCP to treat that. End of discussion. Really, he didn't want to talk about it anymore. Sent me for MRI. Today's nerve conduction study was normal. MRI was same as last which show only one white matter lesion that wouldn't explain my symptoms which could be vascular related and I would need to see my Rheumy about that. Ugh...good news but ugh...

The substitue PCP (my new one had a brain aneurism burst, really) seemed annoyed that the Neuro sent me to him for the hypotension. My blood pressure was 110/63 when check by the nurse. They tested me by having me lay down at which point my systolic went to 150 then dropped to 140 upon standing. Not enough to qualify for DX. He would talk to my Rhuemy and be in touch. That was two weeks ago. Ugh...I want answers! And not just, "it's probably due to your condition." In the mean time, I have been tracking it myself my average is 110/72. I have tracked a few orthostatic hypotension episodes doing the test the way the Neuro did it.

What the deal with the dizziness? It is quite inconvenient. Wouldn't the MRI show if there was a vascular issue in my head? How does vascular issues cause what at times feels like crystal shards shooting through my feet or worse under my finger and toe nails.  This symptom comes and goes regardless of whether I am standing or sitting. It is very random but more frequent in the evening. It can be surprising and uncomfortable but not debilitating. Ugh..

That's 5 different doctors, 6 appointments and MRI in just over a month and still little in the way of answers. Ugh...sorry my posts are always so long. I think I save it up.

[Kendo]

I've been dizzy and playing Dr. ping pong too! Neurologist to rule out myasthenia gravis in Februrary who then sends me to a rheumatologist for autoimmune disease. See him in March and he says no Sjogren's, lupus, dermatomyositis or polymyositis. He says it might be mitochondrial disease or a metabolic myopathy and says I should see a neuro!

In the meantime my PCP is on two weeks vacation but at least he ordered basic bloodwork to rule out some things that caused dizzy spells/heart palpitations in the past, including thyroid (TSH), ferritin and Vitamin D.

I'm in Canada so will likely wait at least a year for the new neuro, who actually saw me 6 years ago and was useless then. He said I needed to see a therapist because "it must be stressful to have a calcium disorder no one can diagnose"! And now I have to wait a year to see if he is any smarter?

Good luck with all your medical investigations!
Kendo

[Head2Toe]

BKreader - I can very much relate to your symptoms.  I call mine vertigo, but that may not exactly be the 'right' word.  It's a strange little feeling that flashes by, sometimes lasting a fraction of a second, and sometimes lasting a couple of seconds.  Leaves me feeling very uncomfortable, like 'What the heck just happened?'  It's actually much worse when I lay down, bend over, etc. 

I also have balance issues and tinnitus.  My tinnitus is a constant tone (sometimes two tones) - it never stops, and my hearing cuts out in one or both ears sometimes.

I think when I go back to the ENT in May, I'm going to ask him to do whatever maneuvers they do to correct BPPV - and maybe that will help.

[Sjocool]

Hello BKreader,

I have experienced something very very close to what you described with the flashing line in your vision. It happened to me about 3 weeks ago. I told my rheumatologist and he said if I had any more incidents to see an opthamologist. I haven't had it happen again, but have felt like I've had peripheral vision problems. Dizziness comes and goes for me frequently. I've had a tenderness in my left temple. I hope you are able to get an explanation, soon. Best of luck.

[susanep]

I have been feeling a weird dizziness the past couple of days too. Don 't know what to make of it. I use to get the flashing light auras before having a migraine.

susanep

[litliwlowa]

BK

On my you are in a dilemma.

In my 20's I had orthostatic hypotension horribly and it was my gyno that suggested my blood sugar was likely crashing so he suggested a tbsp of peanut butter when that happened. Of course at the time I was barely eating to begin with being newly separated and my priority was feeding my daughter. But that did help. What prompted me to even ask a doctor is I passed out at work one day when going from a squating position to standing. I was told by coworkers what scared them is my arms and legs were jerking when I lost consciousness.

Also, I learned from raising up from a laying or sitting position to get up more slowly. For example when laying down, go to sitting position then sit there a minute before going to standing position.

Has anyone sent you to vascular? That's what my PCP did when my BP started acting up but in my case it was spiking. I remain under care of vascular to this day.

Have you been keeping a symptom journal? If not, I would start keeping one. Also, are they checking your BP on both arms or just the one arm? My vascular doc checks both arms, sitting and standing. I actually have a 30-40 point difference on systolic between the two arms, higher on the left than on the right.

By the way, vascular docs don't just treat or address vascular issues in the head. There are a number of forms of vasculitis beyond the scope of one's head. And one can develop vascular problems with Sjogrens

The pulsing tinnitus, I get that too on occasion in my left ear and thus far it correlates for me with increased inflammation putting pressure on that ear. I mentally work around that by telling myself at least I know my heart is beating. Sounds silly but hey, whatever works to diminish the annoyance factor.

I see you have Hashi's also. Has anyone checked status on your thyroid recently?

As for the flashing in your eyes, I have no idea since you've seen the opthalmalogist who says your eyes are fine ( I presume he checked your retinas as well).

Have you considered checking in with your PCP since it's been a couple of weeks when he was going to check with your rheumy?

Amanda

[Nymph]

Hi BK,

Your symptoms sound very similar to my POTS symptoms, but I think that POTS and OH do have quite similar symptoms because of not enough blood getting to the brain. Dysautonomia International has lots of info on all this stuff. I wear compression hose and drink tons of H2O and take extra salt. However, don't know if all that would be good for you since your BP is much higher than mine. Anyway, just wanted to say that is certainly sounds autonomic and you should look into ways to manage your OH. Maybe a cardiologist?

Best,
Nicole

[Tharrell]

Hi BK
Re flashing lights. I know fast drop in blood pressure does that and you got some good advise on that. You may want to look into acephalgic migraines, or otherwise known as migraines without headache.
As susanep mentions she gets the aura, or flashing lights before migraines. Acephalgic migraines is the aura, but the headache does not follow.
I have been suffering from dizziness non stop for three years. No one could figure it out. Went to three different neuros and two different ENT. Got all kinds of tests for seizures and vertigo and autonomic testing without results. I too have problems with blood pressure dumping on me when standing up except when within ten paces of a nurse or doctor of course.
Then I hit the "right" neuro with the "right" idea. She checked my B6 levels which apparently hardley any doctor does and was found defficient. She put me on B6 supplements and a double dose of B2 daily. I'm now also taking topomax 50 mg twice daily to treat both the acephalgic migraines and Isaac's syndrome and my dizziness and flashing lights finally went away!
Now if only I can fix my almost double vision I would be estatic!

[BKreader]

Thank you all for the great comments and suggestions. I knew I could count on you all to make me feel like I'm not the only one with this craziness. I think my next action is to keep steering this ship. I intend to contact PCP and set a general physical and request nutrient panel blood work. Also, contact Rhuemy to see what she thinks of all of this. She will likely want me start Imuran.

I have such a curious mind and I want to understand the pathophysiology of what us happening to me. I hope to find someone who can explain this.

Kendo- Good luck with that; it sounds like you are pretty limited. I have only 3 Neuro choices here that take my insurance but I can travel if needed.

H2T- Yes, vertigo is not quiet the right word for me either. I am not spinning just not right. The world sort of moves and settles in around me. Wonky is my word. Mine is almost constant to some degree with distinct episodes which are more severe. I too have almost constant tinnitus of varying tones.

Sjocool- At first, I thought I was seeing things with the light flash. These were different than the peripheral swimming flashes I get from getting up too fast. I get them sitting, laying down, driving, night, day. Just a quick flash. It's almost a visual manifestation of the random pin picks and shooting pains I get throughout the day. Weird...but I'll get used to it like everything else I guess. I too have had off and on tenderness in my right temple area as well as shooting pains up that side and in that side of my head just above my ear. This is off an on too.

Amanda- no vascular specialists yet but that may be the next step. It seems obvious by my white face episodes that not enough blood is getting to my head at times. I'm surprised that any vascular issues didn't show on the MRI. I do keep a list of prominent symptoms by date but that's it. There are just so many to address I feel like it is overwhelming and people are going to think I am a crazy hypochondriac. Thyroid is good and has been very stable for a while now. Retinas checked out fine.

Nymph- one of the docs (I think PCP) did mention dysautonomia but have had no follow up regarding that. I think the PCP is thinking I need to better manage the autoimmune issues and that might help. My blood pressure was high at he doctor's but seems more stable and in ideal zone at home. Calling him today.

Tharell- I was thinking maybe migraine too but the lights happen pretty randomly throughout the day not in concentration or episode like. I am definitely going to ask about getting all of my nutrients checked.

[irish]

I didn't catch this so forgive me if I am repeating something that has already been addressed.

First thing I checked on was your diagnosis and I see that you have lupus. One of the major issues with lupus besides the larger organs involvement is the involvement of the lupus on the nervous system. I would advise you to get to a neuro ASAP and get this checked out. People with lupus can involvement can have all kinds of central nervous system issues and can also have a psychosis, hallucinations, etc. Be aware that there is such a thing as visual or auditory hallucinations. There are also think that I forgot to shut off the TV. I would get up and search the house for the cause of the voices and not find a thing. Thankfully. this quit and did not come back. Have no idea what precipitated this but was glad to find out what the problem was. Next time it happens I will pay attention to my other autoimmune issues and note if I am having a flare. Also not if something happened that could have precipitated the problem./

The fact that this came on so fast would make me wonder if autoimmune and CNS are involved. Good luck with this and let us know what you find out. Irish