I am 4 months into Bart treament (Rifampin and Zith at half daily doses). Was feeling fine, working out 3-4 days a week with no fatigue etc..
However I have been getting more vagal related irregular beats and spasms all of the sudden. I am now getting squeezing head pain after walking upstairs or a hill, lots of pressure in the head and confusion, disorientation. My Blood Pressure is also a little erratic. Up and down more than usual. Just walked a block to the bank up a graded slope and felt some pressure in the head and some disorientation and increased anxiety.
I had a normal MRA/MRI last week, normal heart tests several months ago, normal echo (mild regurgitation).
Not much choice now but to do a spinal tap or maybe a SPECT Scan and check for intracranial pressure problems.
My other thought is that this could be vagal related since I am getting irregular beats with swallowing, lying back in my chair, or turning my head.
This also could be a bart herx. I really don't want to be afraid to go on a walk, very limiting!
Looks like a spinal tap may be my only choice!
Posted by Lymetoo (Member # 743) on :
Well, then you're braver than me. I won't do a spinal tap unless my life is in immediate danger.
Posted by seekhelp (Member # 15067) on :
Sometimes you have to do what you have to. Good luck.
Posted by Bheiser (Member # 21333) on :
i would do the tap
Posted by Wimenin (Member # 15294) on :
Why are you getting the spinal tap? Are you trying to determine lyme? If so, then NO, dont do the spinal tap. CSF is not very accurate for detecting lyme. If you do the spinal tap and it comes back negative, then what? I guess Im confused on what youre trying to accomplish... There are other tests that can be performed before going the route of the LP. If you do get the LP, be prepared for the possible tap headache that can last for days.. been there, done that.. horrible, horrible headaches. (Although a blood patch and increased caffeine can help with some of that).
Posted by Myco (Member # 9536) on :
Trying to determine what is causing the squeezing pain/disorientation upon climbing stairs.
Could be a side effect of the Rifampin (though I have been on it 4 months) OR intracranial pressure. But if it was intracranial pressure I would think it would have a constant headache instead of squeezing pain that comes and goes.
MRI/MRA was normal. Trying to find a SPECT SCAN in Los Angeles.
Posted by seekhelp (Member # 15067) on :
If you ever find out, let me know. I believe we have the same issue.
Posted by MorningSong (Member # 19989) on :
I have symptoms that are head related. MRI was fine. But was informed that a Spect Scan or PET Scan would show further detail such as blood flow etc. That is the direction that I am seeking to take.
Posted by Robin123 (Member # 9197) on :
Spinal taps are painful and can cause a bigtime headache. And if you're looking for ketes, I understand they show up only 13% of the time.
Are you seeing an LLMD? I think it would be best to look for other options, likw other treatment options, or a SPECT scan, if that would be at all helpful. I am not a doctor.
Posted by Myco (Member # 9536) on :
My guess is this may be a herx. Looking into a spect scan.
Posted by Shosty (Member # 12232) on :
Don't do a spinal tap. A negative result (which is likely) will be used against you for insurance purposes and will cause you other problems, since it goes on your record.
The neck is very complicated. I am learning that as I do physical therapy for symptoms similar to yours. Have you had an MRI of your neck/cervical spine?
I would try visiting a chiropractor. If chiropractic is too expensive,one appointment can be diagnostic and he/she can suggest how to proceed. That's how I ended up in PT.
Or, it could be a herx as others have said. If you stop meds for a day or two, do the symptoms stop?
Posted by pab (Member # 904) on :
I would stop my meds before I would get an LP.
My 2 sons have very high intracranial pressure (pseudo-tumor cerebri). They had/have constant, severe headaches since 1999. They do feel a lot of pressure in their heads.
Both of my sons had shunts put in last year. It helped both of them, but my older son (23) didn't get much relief.
Lumbar punctures were the only thing that reduced their headaches before the shunts.
Lumbar punctures don't have to be a terrible experience. My sons' LPs were done by a neurosurgeon using fluoroscopy under light sedation. They were required to lay completely flat for 4 hours before they could come home.
They were given pain meds and were offered caffeine IVs. The type of needle used makes a difference. Their doctor used a sprotte needle.
They laid flat for 24 hours after they got home. After 24 hours, they got up and if they had an LP headache, they had to lay flat for an additional 24 hours. After that, they got up as they tolerated it.
It did take them longer to recuperate than some people. They have very high pressures and would have fluid (up to 50 ml) drained during the LP. Their brain had to adjust to "floating" on less fluid. The ligaments stretch and that caused pain.
My kids have had many MRIs, MRAs, and MRVs. Every test had a normal result.
My older son had a SPECT scan done. It showed a problem area, but the doctor said that it could be caused by having a headache during the test. My son had constant, severe headaches at the time of the test. His SPECT scan didn't really help him. He traveled from MN to CT to have the SPECT scan done. It wasn't worth the money, time and concern that was required to get it done.
Posted by TF (Member # 14183) on :
Myco, I am concerned that the symptoms you are experiencing could be the signs of severe high blood pressure.
The following quote is from WebMd. See how it lines up with what you are experiencing:
"If your blood pressure is extremely high, there may be certain symptoms to look out for, including:
Severe headache Fatigue or confusion Vision problems Chest pain Difficulty breathing Irregular heartbeat Blood in the urine Pounding in your chest, neck, or ears
If you have any of these symptoms, see a doctor immediately. You could be having a hypertensive crisis that could lead to a heart attack or stroke."
A friend of mine (female) got a severe headache between her eyes during intercourse as she approached climax. It was a frightening headache.
She went to the doctor and told him, and it turns out she had bad high blood pressure. Doc said she could have had a stroke.
So, when a person says they get a headache and confusion when walking up an incline (upon exertion, in other words), I just think HIGH BLOOD PRESSURE!
If you had high intracranial pressure, you would have it all the time, I would think. I don't think it would increase during exertion, but high blood pressure definitely would. Also, a neurologist can generally tell you the chances of it being pseudo-tumor cerebri or not just by an interview and exam.
When I had a continual non-stop headache for 3 months (not on any antibiotics) and asked my neurologist about this possibility, he said that in the vast, vast majority of cases, the person is extremely obese who gets pseudo-tumor cerebri. Therefore, he would not even entertain this as a cause in my case.
Turns out my headaches were rebound headaches due to Fioricet--the med my gp's assistant gave me when I went in for an ear infection and terrible headache.
This was the neurologist's first guess!
Please get your blood pressure tested during exertion or visit your primary care doc and describe what happened as you walked to the bank.
There is also the possibility that you are suffering from POTS (Postural Orthostatic Tachycardia Syndrome). Many lymies have it. Research it and see if it sounds like what you are going through.
Posted by Myco (Member # 9536) on :
My BP is 128/77 at rest. Higher at the Dr's office because I am nervous.
Just had a treadmill a few months ago with normal BP readings at peak exercise but I might be going for one again tomorrow to see if there is something going on.
Thanks.
Posted by seekhelp (Member # 15067) on :
I fall into this risk category (overweight) and sure didn't get any neuro or LLMD's attention even with massive head pressure caused by Doxycycline. My LLMD's nurse said it's impossible basically.
Maybe there are other telling symptoms, things they see on a physical exam to rule it out? I'd trust a neuro's opinion seeing me in-person before a LLMD's nurse talking on the phone winging it. This is probably one area where a true physical exam helps.
quote:Originally posted by TF:
When I had a continual non-stop headache for 3 months (not on any antibiotics) and asked my neurologist about this possibility, he said that in the vast, vast majority of cases, the person is extremely obese who gets pseudo-tumor cerebri. Therefore, he would not even entertain this as a cause in my case.
Posted by 22dreams (Member # 17846) on :
Some thoughts:
Since you seemed concerned about the symptoms, I'd say have another EKG or whatever else is done to check the heart. Erratic blood pressure usually points to the heart.
Lyme and company, as well as some meds, can interfere with heart rhythym.
Long QT syndrome is not uncommon among lyme patients.
Here's a list of meds that can cause it, don't know how comprehensive it is:
This is on my mind because one of my sister's went to the ER from heart pain, dizziness, neck/jaw pain over the weekend. (one who has been in denial about having lyme).
She has long QT as it turns out and was told they see it when it's genetic or when the patient has lyme.
(Aside: I wanna know who that doctor is! simply amazing coming out of the mouth of a Boston/Cambridge hospital's doctor. Any ER doctor, I suppose)
HIV and hypothyroidism are listed (on wikipedia) as causes as well.
I guess long QT can be especially pronounced on exertion/exercise.
Oh, and a spinal tap: I'd avoid at all costs. Only if absolutely necessary.
Edit: if cranial pressure is the problem, then you may have no choice. My dad had a shunt put in to drain fluid because of hydrocephalus.
Posted by Myco (Member # 9536) on :
I am going for another treadmill and also making an appointment with the Neuro.
Posted by Keebler (Member # 12673) on :
Topic: To everyone with CARDIAC symptoms please read!
Posted by btmb03
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Posted by Myco (Member # 9536) on :
Bent over to lift a box this afternoon and got it again, full feeling in head, almost a squeezing, burning sensation, disorientation, possible SOB, Felt really shaky and then it passed. Almost instantaneous with lifting the box. My vagal nerve seems to be pressing on something because everytime I strain or even lean back in my chair I get a few missed beats. Something structural, spinal or vagal.
Rushed to my GP this afternoon and my BP was up but not at dangerous levels. He sent me to get another MRI, this time with contrast. MRA a few days ago was negative for Aneurysm.
I am thinking this may be vasovagal near syncope, but not sure why so much pressure in the head.
Tomorrow I will do a treadmill with my Dr. watching to see what happens, then follow up with a neuro guy.
Not sure what else to do other than stop the Rifampin and Zith at month 4. Sucks.
Posted by TF (Member # 14183) on :
Myco, I was reading the following paragraph in Burrascano guidelines and thought of you. See if it seems to fit your symptoms:
"Neurally mediated hypotension (NMH) is not uncommon. Symptoms can include palpitations, lightheadedness and shakiness especially after exertion and prolonged standing, heat intolerance, dizziness, fainting (or near fainting), and an unavoidable need to sit or lie down. It is often confused with hypoglycemia, which it mimics. NMH can result from autonomic neuropathy and endocrine dyscrasias. If NMH is present, treatment can dramatically lessen fatigue, palpitations and wooziness, and increase stamina. NMH is diagnosed by tilt table testing. This test should be done by a cardiologist and include Isuprel challenge. This will demonstrate not only if NMH is present, but also the relative contributions of hypovolemia and sympathetic dysfunction. Immediate supportive therapy is based on blood volume expansion (increased sodium and fluid intake and possibly Florinef plus potassium). If not sufficient, beta blockade may be added based on response to the Isuprel challenge. The long term solution involves restoring proper hormone levels and treating the Lyme to address this and the autonomic dysfunction." (p. 6)
Posted by bettyg (Member # 6147) on :
i'd never had a spinal tap either.
for 1st hand experiences, click on SEARCH at top
type in spinal tap medical subject any date leave membership no. blank; click search
read all posts/replies for their experiences; if NONE shown, use BACK button and change subject to text; click search.
Posted by pab (Member # 904) on :
[QB] If you had high intracranial pressure, you would have it all the time, I would think. I don't think it would increase during exertion, but high blood pressure definitely would. Also, a neurologist can generally tell you the chances of it being pseudo-tumor cerebri or not just by an interview and exam.
When I had a continual non-stop headache for 3 months (not on any antibiotics) and asked my neurologist about this possibility, he said that in the vast, vast majority of cases, the person is extremely obese who gets pseudo-tumor cerebri. Therefore, he would not even entertain this as a cause in my case. [/QUOTE]
I don't agree with this. My sons (age 23 & 18) have had pseudo-tumor cerebri for many years. They are definitely not overweight.
My kids have constant, severe headaches now. The headache was not constant in the beginning.
PTC is like Lyme disease because it's hard to get a diagnosis and hard to treat. My sons had shunts put in last summer. Their neurosurgeon thinks they got PTC from undiagnosed Lyme disease for many years.
The only way I know of to diagnose PTC is to have a lumbar puncture.
Posted by lymetwister (Member # 19590) on :
77% of LP do miss Bb, so if thats what your looking for, I'd pass.
I have what you describe, only the head pressure I get is much more constant. It feels like someone is inflating a balloon inside my head and in addition, it is so painful at times.
My LP was negative except my Igg was elevated which isn't normal, but in the end, my Neuro doc. didn't know what to make of it or what this meant.
My LP was over 6 weeks ago or longer and now every now and then I get this twinge in my back where they put the needle in. Not sure why I get this, but I know it's not a constant leak as the head pressure does let up.
Dysautonomia is something I have developed while treating as have many other Lymies. If this is positional or excertional, it could be the beginning of a Dysautonomia.
Curious how your heart rate correlates with movement or from seated to standing.
So, even with the massive pressure I feel in my head, my LP opening pressure was Normal. It was a waste of time and it hurt like crazy. The needle is the size of a pencil. I was given 2mg of IV Ativan, I was numbed up with lots of Lidocaine and I'm very stoic. Even with all of that, my anxiety went through the roof during the procedure. I was drenched with sweat afterwards and the pain of the procedure was just god awful.
What is so ironic with this disease is that many of us run to so many Dr.'s as our symptoms just don't seem like they could all come from having Lyme & Co., but it seems like in my case and most everyones that I read on here, every test seems to come back normal.
I am baffled how this can be given the severity of symptoms we have. And when they do come back positive, the Dr.'s put a name to it that is not treatable anyway.
So far, I've been told I have POTS, Dysautonomia, CFS, and Fibromyalgia. I don't even have joint pain, so not sure how FM got on my list. I only sleep 8 hours a day which is not consistant with CFS, I'm just achy and have no energy, so that ones doesn't fit either. Both the POTS and Dysautonomia have no real treatments and if you read on any of the above, there is no medical explanation of why people have these conditions.
The only thing I have seen that makes sense is that medicine does believe they are caused by an unknown bacterial or viral illness, which puts us right back to where we are with Lyme.
I think the Fear and desperate feelings we get, keep us running to Dr.'s, I know this is the case for me.
I'm going to Hopkins very soon, still waiting for my appt. date, but going to see yet another Neuro Doc. and I already know he/she won't be able to help me. I just want to find out what this vibration in my head is that others can also hear with a stethescope.
The sad part is that all of the money that we spend on MRI's and the like could be going to find us a true cure instead of out the window.
Anyway, thats my 2 cents on all of this.
LT
Posted by Myco (Member # 9536) on :
I believe it was a herx.
Did exercise test yesterday and reached 100% HR (160) at 18 mins. BP was normal for exercise. No symptoms. Coupling that with the 10 or so other heart tests I have had in the last 2-4 yrs, it's safe to say there is nothing going on cardiac.
MRI/MRA normal. No aneurysm or vasculitis.
Probably vasovagal response with herx. Had some bad days last week and seem to have come out the other side.