All brain tumor symptoms, but MRI came back clean?

Posted , 7 users are following.

I am 15 years old and i have had severe migraines for about 5-6 years now. At first they only occured once or twice every two months or so, but as years went on they got more and more frequent. My primary doctor sent me to a Neurologist and they said the cause was puberty. So for 4-5 years we waited for my menstrual cycle. About 3 months before i started, my migraines were uncontrollable. I had them everyday for 2 months straight and missed the second half of first semester (freshman year of highschool). I was sent to UCSF for an MRI and a mixture of medicine to break the migraine. They gave me a “migraine cocktail” and it was Benadryl, Compazine, and Toradol. Immediately as they put it in my IV i started feeling like couldnt breathe, as if i was breathing gas. Nothing was exactly painful, but i started coughing a little and the nurse left my room. Then it got worse, the coughing had subsided and i felt really dizzy, my arms got so heavy they didnt even feel like i was moving them and i couldnt focus on things so my parents called back the nurse and she was asking me questions and i couldnt speak and finally she just said something along the lines of just lay down. So i layed down and i was a bit uncomfortable, i felt really uneasy and was quite nervous about my reaction to this medicine but was too out of it to react. I went to sleep and took about a 2 hour nap and woke up to go to my MRI. I was very tired, most likely from the Benadryl and was still feeling some of the side affects. I was all ready for the MRI and they had given me earphones to listen to music but as soon as the MRI started i fell asleep. So i thought it was a bit weird that i had a reaction but the reason i am worried about what else it could be is because of WHAT my migraines are. Everyone expected it to be my period, that started they didnt get better. Then it was glasses, those didnt help either. I dont respond to any meds they give me. When i have a migraine i ususally dont suspect it beforehand. The pain is usually on on my right side around my temple area and it goes down until my ear. It is not “ice pick” or “tension” it is more like pulsating, like when you hurt yourself and it started throbbing. I started noticing around October that my speech was getting worse. I would slur my words when i spoke and would make up words thinking they were words in the dictionary. Yes, i know what you are thinking, this happens to everyone, but it started happening abnormally often. I wouldnt be able to pinpoint an exact thing i would only be able to describe it no matter how simple. My family and friends started to notice too but never thought too hard. After that i started noticing a loud ringing in my ears, not constantly but out of no where it would ring. This used to happen but not this much or this bad. I get nausea and vomiting subsiding my migraines, as most do (i think). I often start a thought or story and completely lose it. For example i could be talking about something that happened yesterday and will completely forget what im talking about. That goes along with also not keeping a good focus (this could be from so many things) i will start doing something and get completely distracted. I tend to forget a lot of things like where i put my phone, when i took off my shoes at, when my backpack is etc. And with all of this, my MRI came back clean. I just dont understand what it is, and no medications prescribed to me have worked and the next thing they want to try is an injection and the base of my head. If anyone has ANY input or questions please tell/ask!!!

1 like, 13 replies

13 Replies

  • Posted

    Hi melissa

    My 14 year old daughter seems to have everything you do except for the slurring. She's had migraines 24/7 for almost 2 years and nothing and no one has helped. Cluster headaches for a year and a half. Allergic to migraine meds. Paradoxical effect with normal pain relief (she has the opposite effect). Vertigo, ear pain, chronic anaemic. It just doesn't end. Neurologist, paediatricians, headache clinic, naturopath, physios, nerve blockers, beta blockers. Was told to take her to hospital if her migraines got too bad. She'll only be injected with triptans which she's allergic to so no point. Summer affects her moreso. Can't adjust her body temp. Currently seeing a psychiatrist and a psychologist. Psychiatrist says she has 'organic brain disfunction'. The wires in her brain don't seem to be connecting, says he can help but it will take time. She can't go to school. Has been left behind socially, has become almost a recluse. Ptsd, social anxiety and major depression are her diagnoses. Botox is the last result, in my daughter's case. However, her gp has said no, and my daughter won't do it, as I'll more than likely be wasting my money if nothing else has worked. My heart goes out to you, melissa, and to your family as it's very hard to watch your own child suffer. Wishing you the very best and hope you have answers soon xx

    • Posted

      Hello franca1712,

      Y'all been through the mill ! Please peruse my response to melissa93521 and see if anything rings a bell for you. Summer is a trigger for your daughter? Because of the extra bright light,heat,allergies???  The first thing often overlooked is hydration. I would suggest distilled water for your daughter and for Melissa93521 instead of filtered water.Has a Angiography (Arteriography) been ordered to check cerebral circulation. How is your daughters cholesterol?Does she have body aches? Kidney stones? Has she been checked for hyperparathyroidism? I'm seeing similar symptoms with your daughter and melissa93521 that need a rule out.I have many for questions but for now drink the water and follow the rule outs and LMK.

      sorry,

      rob88131

    • Posted

      Hi rob. Thanks for all that feedback! You definitely sound like you know what you're talking about. Bloods came back all good for my daughter, other than iron levels. Slightly high cholesterol but nothing major to worry about. She goes for another blood test in about 5 weeks to check her iron levels again. Daughter has had 2 iron infusions in the last 5 weeks making this her 3rd infusion. Anaemia not the cause though. Major stress is what has caused this, I believe, so meds won't, and haven't worked. No one has ever mentioned an angiography, maybe because the migraines are stress related/caused. I was told by my gp that an mri wouldn't show anything but I still proceeded with one and she was right. Neurologist said as melissa was told, that it was hormonal and by the age of 15, on the meds he'd prescribed, migraines would be gone. She's now allergic to all nerve and beta blockers that he'd prescribed. The only thing she does take is a natural medication called 'r16' from a naturopath. It eases slightly but doesn't take the pain away. The sun and the heat make the pain worse, stress makes it worse, her teachers last year made pain worse but unfortunately, there is no relief in sight. Vertigo can cause migraines yet migraines can cause vertigo. Was hoping the infusion would have helped with the vertigo but it hasn't. Her cluster headache attacks are horrible to watch. All I can do is hold her hand and ride it out with her. Sleeps with an ice pack on her forehead. Wears iced eye mask on forehead during the day. She's just not winning.

      Thanks for reading my rant. And thanks for offering more information.

      Franca ?

    • Posted

      Hello to the both of you, im so sorry i originally didnt think i would get any responses and havent checked this site since i posted. Hi rob, i am always fully hydrated i drink atleast 4 bottles of water a day, so i think i am safe to say that is not it. Bright lights do seem to take a toll although i dont think that is my only cause. I dont think an Angiography has been done, i have only had MRI's bloodwork, and the IV done. Also, i have an iron deficiency as Francas daughter does but it is also not Anemia. Heat can make them worse as during a migraine i like to be unusually cold. I hope to hear from you both and I hope your daughter is doing better Franca!

    • Posted

      Hi Melissa

      Have you got any better? Thanks for asking about my daughter. Haven't seen her have a cluster headache attack in a while but it's not to say she doesn't get them. Still has 24/7 migraines that she hides quite well. Still doesn't take any pain medication. Appointment with her psychiatrist last week resulted in him saying that maybe by the age of 25, she'll be migraine free. She's nearly 15 and that's unfair for someone so young, who's not able to experience life like a normal teenager.

      Are you any closer to finding answers?

      All the best to you, and thanks for replying.

      Franca☺

    • Posted

      Hey Franca, i have switched from public highschool to public online highschool due to missing too much school, so no, unfortunately, i have not gotten better. I have not had a migraine where i throw up for hours at a time in awhile, so thats good. I have to say, i think i have built quite a bit of a tolerance to pain due to constantly having to work whilst having a migraine. My doctors said the same thing, by 25 they should be gone, but they also told me they should be gone by 15 and im almost 16 so im not getting my hopes too high up. One thing i recommend your daughter to try is meditation, as crazy as that sounds. While having a headache, early on before it gets too unbearable, i have noticed that if i just sit down in complete silence and clear my mind and meditate even for 5-10 minutes, it helps me alot it really calms my stress levels and can help to get the headache away. Although it may not work for everyone i think your daughter should try it! I hope it works out and i hope we get this figured out soon. You are in my prayers! Thanks! -Melissa 

  • Posted

    Hello melissa93521,

    Wow! You have certainly been through a lot! 

    So the headache is on the right side temple that pulsates down to your right ear? I wonder, when you say the MRI was normal, what exactly were they looking for? Pulsating is usually associated with a restriction in blood flow, either because it is constricted or ballooned. Do you know if your Drs. looked at this area on the MRI? 

    Are you aware of any triggers that instigate your headaches? Such as bright light, blinking lights, cold drinks, sounds, [u]long cell phone use,[/u]proximity to emf/cell towers...If they can find your trigger ,maybe you can trigger one during a cat scan with dye and they could see if it is a circulation issue. This definitely needs to be ruled out.

    Have you tried aspirin and caffeine together? Have you tried very cold packs behind your neck at the base of your skull? Benadryl and Compazine is very good for nausea/vomiting, and Toreador is a slightly effecient painkiller for headache(IMO).

    I wonder why you weren't given any of the medicines that have triptan as a suffix, there are many. Do you have any allergies? Are you anemic? Have you been diagnosed w/ juvenile hemochromatosis?

    I have many more questions for you but for now LMK if anything changes or if my previous questions lead to anything.

    Take care,

    rob88131

    • Posted

      Hi Rob, sorry again! Loud sounds and bright lights will often bring on a migraine, as will stress or lack of sleep. I will look into the cat scan with dye with my mom. I have done plenty of research on migraines and have mentioned it but no one seems to think i know what im talking about haha. Also a notable think that wasnt noted before, when i was born my mom had an emergency C section due to me being in distress, the umbilical cord was wrapped around my head. I am not sure if this would have any effect on me today. I have not been told im anemic but my iron levels were low. I dont have any known allergies. And i have not been diagnosed with juvenile hemochromatosis. I will stay updated with the thread if you do respond! Thank you again if you see this!

  • Posted

    Hello melissa93521,

    I forgot to ask you a few more things. Please peruse my reply to franca1712 and see what you think. Drink mostly if not all distilled water and not filtered water. Next, have you been tested for hyperparathyroidism? LMK.

    Thanks,

    rob88131

    • Posted

      Hi, i will switch my water and update you with the results, and i have not been tested for hyperparathyroidism. Thanks! 😃

  • Posted

    Hello Melissa,

    Im 48 years old now and I had Migraines all my life but till 3 weeks ago I was diagnosed with Hemiplegic Migraines with Aura, and it's exactly how u describe it...

    The forgetting things, words, speech and all..

    My right side goes numb and it's like if I'm having a stroke but not the chest pain..

    My mouth dropped and I got do much pressure on my head from one side to another.. horrible feeling ever..

    I been to the hospital and called the ambulance twice in this 3 weeks..

    I need a good neurologist and I also had MRI done and blood test and nothing they found since this sickeness it's rare and not a lot of Dr know about it...

    Hope u feel better soon and don't give up...we are all in the same situation..

    🤢😷🤕🤔🤔🌼🌱🌼

    • Posted

      Hi Sandra. First, I am so sorry, migraines are horrible. I will look into this, and i hope so so much that you are doing well. Thank you 😃

  • Posted

    im so sad for the pain you are all going through! Truly breaks my heart

    These are not Vestibular Migraines?

    I'm praying for you all for answers xx

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