Horrendous Headache With Hearing Loss??

[louloutinks]

Hi I wonder if any of you can advise me please.

I have had a headcahe on and off for nearly two weeks - more on then off mind. Tuesday night I could barely stand up as it was absolutely painful when I did and then faded after a while to a dull throb when I laid down. I also heard a whooshing of my blood in the back of my head with my heart beat. Wednesday I woke with a painful headache again, that subsided a bit for a few hours and came back last night. This morning, it was dull so I went out to the shops but came back home as it got real bad. I decided to get into bed as I felt nauseous and freezing cold and then my hearing came and went a few times, in the left ear - as if I was listening through headphones and the left earphone stopped working on and off. I have never had this before so am a bit concerned.

I have been getting pains with certain pitches/noises for the past few months too so do not know if this is related. And the other night (saturday) I had, as what I can only describe as a 'funny turn'. I felt shaky, nauseuos, I could hear what my son was saying but the words made no sense, I felt irritable and I felt very odd in my head - but unwell odd - not a nice feeling at all. This lasted about 10/15 mins max and by that time I had got into bed.

Thanks all

[brethor9]

Tinks

Sorry to hear you are suffering so bad right now!! I know you have alot on your plate..try to hang in there and not worry yourself too bad....have you seen your Dr. about these symptoms?? If not I think you really need to especially if they have just started out of the blue; just to rule out there isn't something going on and to ease your mind.

For me when I am at my worst re POTS its my head that suffers the most. The symptoms get so bad (ie intense head pressure, severe pain at the base of my skull, vision issues, numbness, pulsating/wooshing sensation etc...I literally feel like I am having a stroke....in fact I ended up having a lumbar puncture, MRI, CT etc to rule out MS, brain tumor etc but everything came back negative. I also suffer daily headaches still especially at the base of my skull.....I basically wake up with it and go to sleep with it.

When I mentioned it to my specialist he said it is likely due to being low in blood volume and just POTS in general. Just wondering though; maybe a few things to look into....

Have you ever had any issues with your blood sugars?

Have you had any issues with your blood pressure? (swings from high to low can cause headaches according to my doc)

Have you had your ears, sinuses checked to rule out an infection of any sort?

Have you ever suffered from migraines in the past?? (The amazing thing I have learned about migraines is they can cause some pretty frightening symptoms...stuff you would never think!! )

I wish I could take this away from you tinks!! I feel so bad for you its probably the last thing you need to be dealing with right now Big hugs!! Try to take care of yourself...and give your doc a call if you haven't already...PM me if you like

Bren

[louloutinks]

Bren how are you Hope you are well.

I have an appointment tomorrow at my GP but that was for help to stop smoking (I know its awful). I had a batch of headaches that went on for over 3 months at the bbeginning of the year Bren. Today was concerning because of my hearing - it was literally like the wiring was faulty giving the on/off sound. My headache is now back so I am back in bed. I do try NOT to take tablets but today and Tuesday I have had to as they were unbearable and the tablets did not get rid of them completely. I pulled the blankets over my head because of the daylight and I fell asleep in the end. Luckily my friend knocked at my door and woke me else I wouldn't have woken for my son coming home.

I have had numbness in my left arm since Feb so not sure what is going on there. I do get painful pins and needles in the back of my head too but not when I get these headaches particularly. I dont think I have blood sugar problems though I have not been tested Bren.

I get the headaches the same place as you too, from the top half and back of my head to the base of my skull and the whooshing noise but I do get the BP swings too.

I used to get severe migraines - I would be projectile sick with them and my head would be so painful even to lay on a pillow.

I tend to get the visual aura without the migraine nowadays.

Just PM'd you Bren....

[gertie]

I get those type headaches when I have a sinus & ear infection. I can hear the blood swooshing in my ear as my heart beats. I also have Meniere's which can cause hearing problems. Hope you're better soon.

[HopeSprings]

Tinks - ok, all these symptoms have to mean something. Your description made my mind go in several directions. When you talk about a headache while upright that goes away laying down, it makes me think of a CFS leak. I asked my neurologist to explore this possibility with me because of some odd symptoms I'm having. He didn't think it was out of the question and is looking into the best test for this. If your Dr. doesn't think of it, maybe run it by him? Also, from what I read there are things that can be explored with pulsatile tinnitus. Your combination of thoracic outlet syndrome and the pulsatile tinnitus makes me wonder if there is some sort of blockage or narrowing somewhere? Have you had an MRA? Did you say in the past something about different blood pressure between arms? Maybe there is some vascular cause for all this. I don't know what the hearing loss is about - but certainly something to be investigated! There's got to be some explanation for at least some of this. Let us know what happens with the Dr.

[louloutinks]

Hi Naomi and all

Went to the GP this morning and told him about the headaches etc, he wrote it all down, looked in my ears which were fine. He said they may be tension headaches and to keep an eye on it and if they carry on or get worse tehn come back.My neck has been extremely painful too so maybe thats it.

I told him (i felt stupid saying it )about the hearing loss I got with the headache yesterday - he said it wasn't stupid. I presume the whooshing is just caused by BP as I never used to get it like this - I used to only get it if I laid on one side of my head when I went to sleep but now I get it whenever, whatever I am doing. My Bp was 125/86 at the docs today so he said that was normal too.

My thoracic mri did not show any compression in that area at all but the specialist said that the sunken veins on elevation show that there is compression. I did have different BP's in both arms but I haven't been checking that to be honest. There must be something making my arm have numbness daily and constantly - but they are sending me to physio to deal with that. I need to do elevated arm strengthening.

Whats an MRA by the way? I will look up CFS

Edited September 16, 2011 by corina
removed unnecessary quoting

[louloutinks]

OMG I just looked CSF up (I looked up CFS at first lol - chronic fatigue syndrome) This is what I found:

The headaches only occur when the patient is upright, and gradually disappear when the patient is lying down. In most cases, the headaches gradually increase from the moment the patient wakes up in the morning. However, in other cases the headaches are quick and severe. The acuteness of the headaches varies in each case, which affects how quickly the condition is diagnosed. Some of the related symptoms of SIH are a loss of hearing, tinnitus, vertigo, stiffness of the neck, nausea, and even vomiting.

And this on wiki:

A CSF leak is most often characterized by a severe and disabling headache and a spectrum of various symptoms which occur as a result of ICH. These symptoms can include: dizziness, nausea, fatigue, a metallic taste in the mouth (indicative of a cranial leak), myoclonus, tinnitus, tingling in the limbs, facial weakness amongst others.

I told my doc this ,mornign that I am waking up with a dull headache every day and by lunchtime it is full on.I have been getting a horrid taste in my mouth (not sure if it is metallic though) and have been waking through the night by shaking of my arms (the vibration wakes me up) and last night even my butt cheek was shaking along with my arms. I have had tingling and numbness in my left arm and the hearing loss was in my left ear yesterday. I have also been getting a sharp stabbing pain in my jaw bone just under my left ear but only in one spot.

The only thing is is that even when I lay down, I still have the headache but just not as bad - it takes a while for it to ease but hits hard again on standing. So it doesn't go fully when I lay down, so that is making me think otherwise but all the rest seems to fit. I do not know if this is related but on saturday I had to coem home from a friends house as I felt bad. Started with nausea, and then I came across really unwell in myself, I found it difficult to make a cup of tea as I didn't know what I was doing, so I went to bed. My son was speaking and I heard the words but they made no sense and I felt irritable with my son and told him to be quiet, as I didn't feel good. Never had that before. Could this be related to the headaches I am getting.

My doc did ask if there was any toher odd symptoms and I didn't think of this or the funny taste I get - didn't think it was relevant at all and thought it may be dehydration.

[HopeSprings]

Tinks - the strange gushing salty taste in my mouth is one of the symptoms I'm wondering about (for me). I think a CSF leak is a pretty rare thing, but I feel like when it's years and many tests later, we should look for rare things (though Dr's don't like to). An MRA looks at blood vessels specifically. Someone mentioned subclavian steel to you in the past and that kind of makes sense with your symptoms. So this Dr. is doing nothing?? I'd push if I were you Tinks.

[brethor9]

Hey Tinks!!

I am going to PM you when I have more time!!

Just to let you know I have had a CSF leak after a lumbar puncture and the symptoms are similar....duh I should have mentioned that in my last post! anyways if you do think it could be a leak try some caffeine...usually with a CSF leak drinking lots of caffeine helps it and you must lay flat!!! even up to several days...something to do with increasing blood flow and it aids in speeding up the bodies natural patching abilities. If this doesn't work and a leak is still suspected they can perform a blood patch (take blood from your arm and inject it into your spine near where they suspect the leak is) the injected blood is then to form a seal over the leak...it works almost instantly!! Also during this time if you think you have a CSF do not take ibuprofen as it prevents clotting.....I made this mistake after my first blood patch and ended up having a second one

Hang in there my sweet!! If it is a CSF I know how awful it feels but atleast it can be fixed relatively easy. Are you going to call your GP and mention to him this possibility?

P.S an MRA is a Magnetic Resonance Angiogram.....it is similar to an MRI but looks at the blood vessels and arteries in your neck and brain to check for swelling, compression, clots, etc...

Take Care and I will PM you later (trying to get the child out the door without the morning meltdown...sigh) when I have more time......get some rest and stay off your feet if you can!

Hugs

Bren

[brethor9]

forgot one more thing? you mentioned they did an MRI of your thoracic spine...have you had an MRI of your whole spine?? sometimes even a bulging disk, pinched nerve or sciatica in your lumbar spine can cause issues with circulation, compression,etc. Lower lumbar issues have also been known to cause numbness and tingling in the arms.

Bren

[louloutinks]

Hi Naomi, not sure what the tastte is in my mouth - not metalic or salty.

I am hanging on the side of not CSF because my headaches do not completly go when I lay down. I do have EDS and I read on wiki that there is a link with this and CSF. My doc is doing nothing - I am waiting for an appointment at the NHNN in London (Uk main neuro hosp) and they may be able to deal with this there?

Bren, you have had a leak (lol). Did you lose your hearing with it too. i have had a brachial plexus and cervical MRI. The first was clear and the latter showed minimal bone spurring.

I HAVE to have a coffee in the morning Bren - cannot function withouht it. A while back, about 2 years ago, I was told that I had subluxed my sacro joint and it was agony but have not had any lower back issues since.

With the GP's over here, it is just a 5/10 min appointment slot - wish we could just ring them up and speak to them.

Speak soon Bren x

[HopeSprings]

Bren - do you know the best test for detecting a leak? My Dr. said he is going to ask his radiologist friend - that was over 2 weeks ago. I need to call him. I'm wondering if it could be a CSF leak because of the taste in my mouth and also the insides of my ears are often wet after laying down (it's very strange) - no headache, but head PRESSURE.

[brethor9]

Hi Naomi

Oddly enough, the 1st test my specialist did to check for a CSF leak was a lumbar puncture.....usually because if you have a leak when they do the spinal tap your spinal pressure will be abnormal and that can indicate a leak....the kicker to that is a lumbar puncture can also cause a leak (lol!) which is what happened to me! The more traditional way of detecting a CSF leak is usually an MRI of the cervical/thoracic and lumbar spine and head (although there are occasions when the leak is so small it does not show)

My spine specialist went ahead and did a blood patch solely based on my symptoms (crushing head pain and pressure,nerve pain/pain in my back....I could barely hold my head up and when I stood... god help me!! it was horrible pressure! and the fact that as soon as I laid down it got better and caffeine would alleviate the pain for a while). The immediate relief I experienced right after the blood patch made him come to the conclusion that it was a CSF leak.

Oddly enough before I was diagnosed with POTS my spine specialist thought I could be suffering from idiopathic spinal leaks (they can happen)as the symptoms are so similar....I never had any visible leakage (like you have with the wetness in your ears) but I have definately talked to other people who experienced this.

Its definately worth looking into Naomi! CSF can cause similar symptoms so I wouldnt hesitate to rule it out and your symptoms sound very closely to what I experienced.

Keep me posted ok? Take care

Bren

[louloutinks]

I am now vomiting when I brush my teeth - my right nostril runs badly when this happens. Nausea every day. Today my head is crucifying me just by raising myself up slightly in bed. I have had the worst stiff neck ever this mornign but has subsided slihtly. Movement is killing my head apart from laying down flat on my back. If I stand it is agony, then I sit and its get worse for a moment, I lay down it improves but does not go. My left ear has tinnitus, hissing and popping. My neck is painful on the left without movement but very stiff to turn to the right.

Just typing this my head is real bad as it is slightly elevated. I want it to stop.

Edited September 27, 2011 by corina

[HopeSprings]

Tinks, that sounds bad! Are you any better today? If not, maybe go to the hospital?

[brethor9]

Hi Tinks

I am really concerned about these horrid symptoms you are having!! Have you been back to your doc to see if he can get you some type of relief? Did you discuss the possibility of a CSF leak? more and more it sounds like it could be a real possibility....if he won't help you at this point I agree with Naomi and I think you need to go to the emerg or urgent care at your hospital. You cant continue on suffering its just not right and you dont deserve it and you have your wee guy to take care of on top of all of this which must be so hard!! Please keep me posted as to what is happening....if you are feeling any better or if you made it to hospital maybe??? Sending you the hugest hugs my friend!!! Hang in there!

Bren

[louloutinks]

Hi Naomi and Bren.....I was in bed until about 1pm yesterday after my son went to school at 8am. If it is a CSF leak then surely it would be all day everyday. Mine tend to come in batches to be honest so do not know if that would be CSF. The last batch lasted 12 days or so but yesterdays HA came and went after a few hours.

Maybe I am getting sinus with the salty taste. But the vomiting is worrying when I brush my teeth - it is instant and projectile (maybe because I am sick it makes my nose run?). Today I brushed my teeth and felt like I was going to be sick so I had to stop brushing and had to keep swallowing to try to stop the sick feeling. I felt ok today as I had no headache (the usual dizzy potsy stuff still) but whilst at work, I had the most awful pain shoot from inside my neck to the top of my skull and I had to stop and lean on a table until it stopped after 30 secs. I have never had that. I have often had pains shoot from the top of my skull into my head - like icepick headache but never from inside the back of my neck. Apart from that all has been ok today.

Should I tell my GP about the vomiting with brushing? I feel they do not know much about anything other than coughs and colds - last week when I went he said they could be tension headaches (I do not think so but maybe I am wrong) but not with losing my hearing last week and other odd things. Maybe it is autonomic dysfunction affecting various things all at once.

Hope all is well with you Bren?

I have asked to be put on the cancellation list at the Neuro hosp in London else I will be waiting for months so I may be able to get an appintment in a couple months

[HopeSprings]

I don't think the headache has to be all day, everyday. Is it relieved by laying down? See below - it talks about nausea and neck ache. I'm not trying to push for the CFS leak. It just kind of sounds like it. Could be sinuses too, maybe an infection? You just didn't sound good yesterday. I hope they can figure something out at the neuro hospital.

What are the symptoms of low pressure headaches?

The classic symptom is a headache that becomes severe when the patient is upright and quickly disappears when the patient is lying flat. Thus, the headaches are typically absent first thing in the morning, and start or worsen shortly after getting out of bed. The pain is often worse at the back of the head, and may be accompanied by some neck discomfort and nausea. Rarely there are more serious neurological symptoms caused by stretching nerves or the downward displacement of the brain.

[louloutinks]

Hi Naomi, I really can see that my symptoms do seem like CSF leak but I am trying to find other possibilites too. What with my EDS as well but am trying to be logical and err on side of caution. I have had sinus years ago but I got a horrible taste rather than salty but hey things can change.

Another strange thing I have noticed, this morning when I stood up, my head was really painful, then eased but I nipped to the toilet and when I sat down, the pain got really bad. Stood up, it was ok but then when I sat down again it started - the complete opposite of the other day. It lasted about 45 mins then stopped completely (thankfully). Something is odd I know.