Side effects

Last week was a bit manic by my standards, a gp appointment followed by a trip to hospital for my caffeine infusion. Add in visits from friends and a surveyor to look at the damage a water leak had caused (thankfully none but there is cosmetic damage as part of a wall had to be removed) it was too much for me. Most of these events occurred before Thursday’s trip to hospital, so when I wasn’t feeling well on Thursday I put it down to doing too much.

hole-from-leak-repair

The caffeine infusion was a bit of a nightmare as my veins were not playing ball. If I am tired and cold my veins tend to hide and I knew that my blood pressure was low, so I was constantly drinking to try to give it a boost. After nearly a litre of oral fluids I managed to raise it to 112/83, I have no idea what the starting point was but I would hazard a guess of between 90/60 – 100/70 both of these readings although considered in the normal range make me feel rank, I feel better the closer I get to 120/80. By the time the infusion had finished it was reading 125/85.

 

The department was exceptionally busy and this wasn’t the day for a cannula insertion to take longer than the IV caffeine takes to administer (2 hours). The staff that have experienced my veins before now tend to run away, which means it takes ages trying to convince someone else to give them a go. What was more irritating was the nurse that had the second go, wouldn’t listen to me. She was one of those nurses who just ignores what the patient tells them and carries on regardless. Three failed attempts later she decided that a glove filled with hot water might be a good idea. In the end I had five different people attempt to gain IV access, it was a naval doctor who got a vein on his first attempt. However by then he was discussing with me why I hadn’t got a port to make life easier for them and me.

 

I had already discussed this with my neurologist, whilst he was performing the occipital nerve block injections (GONIs). He isn’t actually my doctor anymore having moved departments but is often in the unit where my infusions take place. So when I know when my next infusion will be I email him so that he can do my injections. The headache nurse that did them before doesn’t do them the way he does and I find his are much more effective. The upshot of the port conversation was that I wasn’t having the infusions regularly enough, the risk of infection and the fact that they hadn’t called down the vascular access team. Believe me that is only going to be a matter of time.

 

I did manage to run into my PoTs consultant as we were leaving the unit and I asked him about the possibility of starting melatonin due to my sleeping problems. As it was just a quick check on me to see how I was doing he asked me to email him to remind him. There are such good doctors at the hospital, who have no problems with patients emailing them when they have concerns. He is the doctor that writes the prescription for the caffeine infusion each month. I email him the week before to remind him and he emails me to let me know he has done it.

 

The day after a caffeine infusion are always a bust, I need to rest all day due to the travel involved and all the stimulation from the lights and noise. Friday I spent the day lying on the sofa, I put down not feeling great to the caffeine infusion and the explosive diarrhoea I had experienced at 1am (for over an hour). Initially I put the shits down to a stomach bug but having thought about it, the caffeine infusion can act as a bit of a laxative and maybe it was that as after the one hour-long bout I didn’t go again.

 

Saturday I was floored by vertigo and my heart kept doing funny beats, where it goes slow and then returns to normal speed. I felt so ill that all I did was lie on the sofa under my heated throw. I took some stugeron (travel sickness tablets) and that did ease it quite a bit but I was very limited with only being able to lie down, using my chromebook or phone was difficult. My blood pressure was also feeling low, I didn’t measure it, I rarely do now as I know what my symptoms are, plus it was upstairs and there was no way I would manage to get it. I ended up crawling into bed at around 6pm because the stugeron had worn off and the room was spinning. I looked ghastly, white as a sheet with big black rings under my eyes.

 

Sunday followed the same pattern, woke up feeling rough despite sleeping like a log. Now along with the low blood pressure, vertigo, funny heart beats and generally feeling like crap I had developed wheals on my face. I also felt extremely low like I could burst into tears at any moment. I put being low down to feeling so awful. It wasn’t until the late afternoon I put the pieces of the puzzle together.

 

When I saw my gp on Wednesday I had told him that I hadn’t had a proper nights sleep since the end of November. I had either not been able to get to sleep at all or slept for one or two hours and then spent the rest of the night awake. This sleeping problem was then triggering anxiety, an increase in pain levels and being bad-tempered. When I don’t sleep I find that my normal aches and pains are amplified by a factor of 100. This then makes me anxious and then continual levels of high anxiety can send me spiralling into depression. Having been severely depressed previously I didn’t want to go back there.

 

For about a year I have been taking the antidepressant mirtazapine (15mg) to help me get to sleep. Initially it worked wonders but over the course of a few months it was no longer working. My gp agreed with me to increase it for a month to help me get some sleep. I started taking the increased dose on Wednesday night, it worked beautifully I was falling asleep and staying asleep. However the start of me feeling really rough coincided with increasing the medication. After a quick search on Google it was obvious that the mirtazapine was what was causing the problems. Side effects listed included

  • Vertigo
  • Low blood pressure
  • Palpitations
  • Rash
  • Changes in mood

 

And they were just a few of the side effects as there were many listed. So I dropped the dose back down to my normal 15mg on Sunday night to see what would happen. If I still had vertigo etc on Monday then I would contact my gp and see about stopping the mirtazapine altogether.

 

Monday morning however I woke up with my eyes very swollen

 

allergic-reaction

 

allergic-reaction-2

In these photos the swelling has come down considerably. My under eye area had been very itchy since Thursday which I had put down to dry eyes which is something I suffer from anyway. Monday morning I really had to stop myself from scratching as I would have scratched until I bled. I dosed myself up with antihistamines and then waited to see if the vertigo started again. The vertigo had been coming on 3-4 hours after waking up, so I bided my time before pronouncing a vertigo free zone. Thankfully the vertigo hasn’t come back since dropping the dose back to 15mg, my blood pressure is back to its low but normal state.

 

My gp rang me by chance on Monday and I managed to miss the call. He let a voicemail saying he had received an email from my PoTs consultant about starting melatonin and had written me a prescription for it. I rang the surgery back to pass on the message I had dropped the mizatrapine back down to 15mg due to the side effects I was suffering.

 

Tuesday morning there was no swollen eyelids which was fab and I had slept well due to the Melatonin I had taken the night before. I have been sleeping all night and feel more rested than I have done in a very long time. I still have fatigue but it’s no longer at the level it was when I wasn’t sleeping. I don’t know now if the mizatrapine caused the swollen eyes or if it’s something I have eaten. It could be anything at all as I can react to stuff and then the next time I have it there is no reaction.

 

So now I am back to my normal level of crappy health after four days of feeling truly awful and almost being confined completely to my bed due to the vertigo. At least however (touch wood) so far there seems to be no issues with the melatonin.

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Eventful

On Thursday 1st December I had my 6th Caffeine infusion. To say it was eventful would be an understatement. What has previously gone ahead pretty smoothly other than being unable to cannulate me without multiple attempts was littered with potentially dangerous errors. I am still in shock to be honest.

Over the few days leading up to the infusion my head was letting me know it was long overdue. By the time Thursday came around my head pain (from a csf leak) was reaching a 7 out of 10 on the pain scale within seconds of getting upright. By the time I reached the ward I was dry heaving, which happens when the pain gets to a certain level. I had felt sick before leaving the house and had taken my anti-sickness medication hours earlier but they had done nothing. All I was relying on to prevent me from blowing chunks were deep breaths and they were becoming ineffective.

On arriving at the unit I advised them of the fact I wanted to be sick, several times. My request for anti sickness medications went unanswered so I demanded a bowl as I didn’t want to puke all over myself when I didn’t have a change of clothes with me. In every other hospital situation I have been in when I have told staff I needed to be sick they have sprung into action. Here I was asked by one member of staff if I had a hangover, I don’t drink, well it’s easier to say I rarely drink. I had drunk two bottles of Budweiser the night before as my head was bad and it was a last resort but it wasn’t enough to give me a hangover. I calmly explained to the member of staff, the same member of staff I have been seeing since June (every month) that when my head is bad I will be sick. He knows who I am as he then asked me how my birthday had gone and laughed about the fact Mr Morris had booked me a dentist appointment on my birthday. So he could remember that but not the issue that I come in and see them for every month.

This time it was on my notes that I had to have an ECG, whilst wiring me up I was given a sick bowl. The battery was out on the machine so the nurse had to get a new one. Whilst she was gone I dry heaved into the bowl, bringing up no more than a couple of teaspoons worth of saliva. The dry heaving was automatic, I had no control over it, yet when the nurse came back she demanded I lie still so that she could do the ECG. Believe me it gets worse. Anyone with a modicum of common sense would have sorted out anti-sickness medication so that I didn’t want to dry heave during the ECG but no she was getting the ECG done and I wasn’t to interrupt with anything so petty as throwing up.

Finally after what seemed like an eternity I was presented with two tablets in a paper cup. I looked at them and I don’t know what happened but I asked the nurse what it was. A lot of the time I wouldn’t do this, many patients don’t and just assume what they are being given is correct. So let this be a lesson to you, accept no medication without asking what it is. Nurses / doctors are only human and make mistakes. The nurse told me it was ondansetron, a medication that I have suffered a hideous allergic reaction to when given via IV in 2014. Now this nurse (same one as the ECG nurse) had just put my red wrist band on, the one that alerts staff to the fact the patient has allergies so they must check their notes before issuing medication.

Red wrist band

Red wrist band

 

I carry with me at all times a mini medical file which contains the latest letters from my consultants, my prescription list (I can print off from the doctor’s surgery) and a list of my drug allergies as I have quite a few. Every time I arrive at this unit they ask if I have allergies, I give them the list, they scan it and the same receptionist tells me every time that I won’t need to bring it with me next time. On Thursday she just asked if I had allergies and printed off a red wrist band. I assumed that the allergy list was in my notes. After I pointed out I couldn’t be given ondansetron she checked my notes and surprise, surprise my allergy list wasn’t contained within the file. So my hospital buddy Sharon found it in my bag and gave it to her. Sharon was sat in shock that potentially this nurse had nearly just killed me. Sharon is a veteran of hospitals and said “I never ask what they are giving me, I just assume it’s right”. I told her over the months of me coming to the unit I had heard them give patients ondansetron as the anti-sickness medication of choice. It is probably the cheapest and I don’t blame them for that but not everyone can take them and before issuing a patient wearing a red wristband it might be an idea to check their allergies. If they don’t ask you demand to know what medication they are trying to give you. I don’t want to sound melodramatic but I might not be alive today if I hadn’t have asked the question on Thursday.

As I couldn’t take ondansetron, I was given cyclizine a medication I have taken numerous times before with no issue. In their wisdom they gave it to me in tablet form despite me telling them I wouldn’t keep it down. I had stopped drinking at this point despite my tongue sticking to the roof of my mouth as I was so dry. When I tell you that I am not going to be able to keep a medication down I am not pissing about or trying to be difficult. They ignored me, so I took the tablet and promptly threw it up much to the nursing staffs surprise.

I won’t lie I had come into hospital on Thursday fully expecting a fight with a nurse I shall refer to as Dick. Dick seems to have a problem with my wheelchair and will move it away from my bed and put it in the next room claiming it’s in the way. As my chair will cost £2,500 to replace I have an issue with it being left unattended. He even has a problem with my old wheelchair insisting it is folded up and moved away from the bed. He also won’t provide my hospital buddy with a chair let alone my husband so they always use my wheelchair.

Sharon had witnessed this nurse’s behaviour during my last caffeine infusion. She knew from our conversations over the last month that I wasn’t going to accept this from him this time. To me it seemed to be disability discrimination, he also has a problem with the walking stick I bring to help me transfer from my wheelchair to the bed. I was fully ready to get PALs involved if he kicked off this time. Much to our disappointment  Dick wasn’t on the ward when Sharon moved me through into the unit so by the time he came back from his break, she was fully ensconced in it, at the foot of my bed using it as a chair. We were pissing ourselves as we could see he was seething that we had got it past him. This entertained us greatly whilst we were there and the junior doctor we spoke to who managed to cannulate me first time whilst I was waiting for the cyclizine to come. Although he didn’t say it in so many words he also thought Dick was being a dick about the wheelchair.

The room in which I receive the infusions is pretty small, it has six beds and then a desk by the door where the nurses and doctors do their admin work. I don’t know which doctor it was that had to do the prescription for IV cyclizine but he was kicking off that they hadn’t done it IV to begin with when I was telling them I wouldn’t keep the tablet form down. So someone in there does have some common sense. I also heard the same doctor getting excited about my ECG asking the nurses who was in with sinus tachycardia, the nurse dealing with me told him “she’s always like that and we aren’t treating her for that”. Poor lamb had only wanted to help and was asking the question as to why my heart was racing whilst I was lying down still during an ECG, now we will never know as PoTs is only supposed to occur with changes of posture, I hadn’t moved for ages at the time the ECG was done.

Finally after what seemed like forever I was given IV Cyclizine. Within a few seconds of the injection being finished I really didn’t feel very well. I must’ve turned a funny colour too as Sharon told me I wasn’t looking very well. I suddenly felt very panicky and was worried that the nurse had just given me Iv Ondansetron. I just about managed to tell Sharon that my chest was tight and I felt woozy. Within seconds I was battling to remain conscious, my eyes were rolling in their sockets, unfortunately no one could see this as I had my large very dark glasses on as I become very light-sensitive when my head pain is bad. I felt myself falling as I slumped to the right hand side of the chair. For the briefest of moments I blacked out only coming around as Sharon was screaming my name and shaking my leg trying to rouse me. I couldn’t respond as I was still fighting to stay awake, I couldn’t focus on anything as my eyes just kept wanting to disappear into the back of my head.

Eventually the nurse realised something was wrong and whacked the bed back so that I was flat and then took my blood pressure. By the time she got her reading 109/73 I was feeling more or less with it again. She was trying to excuse herself for not noticing the fact I had passed out by telling Sharon and I it was because I was wearing makeup and sunglasses. I think the biggest clue was I wasn’t responding to Sharon and had slumped to one side. She did tell us that Cyclizine can crash your blood pressure which was obviously what it had just done. What she failed to tell me was that it would repeatedly crash my blood pressure for the remainder of my time in the unit. You’d think that she would have monitored me regularly after that episode but she only took my vitals once more and that was just before I left, nearly three hours after the faint.

I have faced some scary times when in hospital but that has to be one of the most frightening because I was shit scared the nurse had killed me by giving me IV Ondansetron and who can blame me with her laissez-faire attitude towards protocol.

I spent the rest of the infusion time trying very hard not to faint. Throughout the infusion despite the extra fluids going in, I kept feeling like I was going to pass out. I kept feeling like I was having an out-of-body experience. I knew if I fainted again there was a high probability of me not being allowed home, so I drank loads and kept being completely upright to an absolute minimum.

I only let Sharon know how bad I was feeling so that she could place herself in front of me should I try to face plant.

Despite how awful I felt I did have a good time during the infusion, it’s always great to catch up with Sharon, we always have something to say. Plus I got to catch up with a doctor who I thought I had lost forever to the acute stroke ward. He knew I had been to Bath the week before (it wasn’t a great appointment and all they will do for me is write a strongly worded letter to tell the hospital to get on with the blood patch as there is no increased medical risk) and we talked about the clinical trial that he wants me to be a part of. Its called a Sphenopalatine ganglion Block, it’s basically a small catheter type device placed up your nose, which they then use to squirt a dose of local anesthetic up. It works on a group of nerves at the back of the nose and has good results in conditions like chronic migraines, trigeminal neuralgia and facial pain. This doctor and my neurologist want to trial it to see if it is effective for pain caused by a CSF Leak and I am more than happy to give it a go if it has a chance of stopping my pain completely.

I let this doctor know that last month’s occipital neuralgia nerve block injections had been ineffective. I told him although the nurse that does them maybe highly qualified she doesn’t do it the same way he does, which is multiple small injections along the occipital nerve. He agreed due to the fact the last lot hadn’t worked he would repeat them for me, if he came back from his meeting before I left the unit. Thankfully I was still there on his return and the injections he gave me have worked beautifully.

I have very little memory of the rest of Thursday, Friday and most of Saturday as my blood pressure wouldn’t settle and kept crashing after the cyclizine injection. I have had to piece the events together from Sharon and my husband. I don’t think I have ever been made so sick from a trip to hospital.

Due to the incident with the nurse ignoring my red wrist band and attempting to give me a medication I am allergic to, I have had to report the incident to the hospital. I have wrestled my conscience and I wouldn’t be able to live with myself if another patient ended up being given the wrong medication due to protocols not being adhered to. It could make things very difficult for me in the unit but I couldn’t live with the thought that  by not making a complaint it contributed to someone else coming to harm.

So last week’s Caffeine infusion was eventful to say the least.